The Lord gave us rest for three days. Joe was able to let his body and mind rest. It was such a good thing for Joe and me being able to just be together as well as enjoy the things we l love to do.
On Friday night we started with a early dinner at La Vista, an Italian Restaurant not that far from our studio apartment. We arrived just before 6PM which avoided the crowds that like this place. It was highly rated on YELP.com and it was not far away. Joe had the rib eye special that was tender and packed with flavor with its peppercorn sauce. Along with it they served a huge portion of mac n cheese and asparagus. He loved it and that made me happy. I really love seeing Joe happy and pleased. I had their Chicken Cappelini that was raved about by several guests. It was good and light but I would not rave about it but the chicken was tender as well as the mushrooms, fresh cooked tomatoes in a light white wine sauce. Joe is not allowed to have salad since he is only allowed to eat cooked veggies nor drink any alcohol. I shamelessly had the Caesar Salad and a glass of Pinot Grigio. The place had a nice outside covered patio that was in front of the restaurant. This time of year makes it perfect for eating outside but we chose to eat inside where it was comfortable and only one other couple. By the time we left at 6:50PM the place was packed as YELP said it would be.
Since the World Series was not on, we decided to go see a movie. We were going to see "Let Me In" but it started at 6:50PM at the theater we were going to. So we headed to the other Edwards Theater closer to us than the last one where we were going to see Ben Affleck in "The Town" that started at 7:35PM. We got to the theater at 7:15pm and we did not want to hang around for 20 minutes until The Town started so we got tickets to "RED" that started at 7:20PM. Drew, Joe's brother, had recommended it to us so what the heck we would go see it. The movie was for "our age" group. It was a spoof and somewhat funny and far fetched but entertaining for two hours.
Saturday was our day to drive with Max to Dallas to visit my friend, Julie Campbell Stephens. She lives with her growing family in a very nice family orientated town of Highland Village with nice well taken care of brick homes in a well planned community. It is a wonderful place to raise a family. Julie is married to Russell who works for the Secret Service who guards the President of the United States. Julie has become a very happy homemaker and mother. She says being a mother is the best job that she has ever had. Julie was an officer in the US Army which she loved being a part of. It was where she met Russell, The first time they dated nothing came of it but when they reunited the second time, it gelled together and love happened, marriage then the baby carriage. Campbell, their beautiful 2 year old daughter, was a blessing from God and what Julie dreamed of along with being married and happy to one who was a strong Christian man and Russell definitely fit the bill. Russell reminds me of Bruce Willis for some reason besides the well shaved head. Julie is eight months pregnant with their second daughter, Lily who is due around Thanskgiving.
With the sky bright blue along the rolling hills between Houston and Dallas it was a perfect day to drive. The Houston area is being pumped with a bunch of road money since it seems every major interstate is being widen. They sure need it here. Joe and I split the 4-5 hour drive making it relatively easy trip. Along the way just outside of the town of Huntsville, there was a massive white statue of Sam Houston which stood about 100 ft tall. Sam Houston University is located in that town as well the the Prison Museum.
We arrived at Julie and Russel's lovely home about 4 PM. Julie with her 8 month pregnant belly came to greet us as we stepped outside and gave us both big hugs. We were so happy to see each other. I rehashed the story on Joe's disease and how we were guided by the Holy Spirit as to what to do. Julie was in the middle of making a pumpkin pie cheesecake for Joe since it is one of his most favorite desserts. For dinner Julie made a nicely seasoned roast chicken with gravy, massive amounts of mashed potatoes and fresh asparagus. Joe was in heaven. I instructed her how to make a delicious smooth chicken gravy and to taste it then season it to its to your liking. I also cut up the roast chicken for her as Russell set the the table. Russell said a beautiful heartfelt Grace that was touching to Joe and me. Campbell had waken up from her nap just before dinner. I sat down on my rear end near her little toy kitchen and we pretended to eat the toy food. She knew what everything was. We went outside to the back yard where she played jump off a rock over and over again while holding her little fingers in my hand. She insisted that I also jump off the rock. It was entertaining to her for quite awhile. As we ate dinner, Campbell had sliced oranges and some blueberry yogurt.
watch me stack the blocks up high and she would laugh and knock them down. Over and over again, we played that game. She giggled and smiled the whole time. I sang poorly. "Happy and You Know it. Clap Your Hands." She clapped her hands, stomped her feet, tapped her head, rubbed her tummy. She must have had me sing that at least five times. Kids love repetition. The next thing we did was play "Ring Around the Rosie" and I plopped her to the floor when we all fell down. Oh she loved that too! The last thing I did was read her "Snow White and the Seven Dwarfs" quite dramatically. Mr. Joe says she was spellbound and really got into the story. Oh how she loved Snow White! Ah, it was time for bed since she was rubbing her eyes. Julie and Russell put her to bed together so lovingly. They close the door and Campbell would entertain herself with her precious little stuff animals till she fell asleep on her own. Julie has a camera phone where she can keep an eye out for Campbell in her bed and room. I just was mesmerized watching her interact with her little stuffed animals. I fell in love with Campbell.
We watched the Ranger/Giant World Series Game till it was over and the Rangers finally won a game. After the game Joe and I decided to call it an early night since we would be going with Julie to her church where the first service started at 9AM. The Village Church is located in an old grocery store and had been modified into quite a large auditorium with orchestra type seating in the front and stadium seating in the back. The place is huge where 1500 people can attend worship at one time. The church has four services and several satellite churches. Their membership is 10,000 with an 11 million dollar budget. It was mind boggling to Joe and me. Ninety percent of the attendees were young couples (in their 20's and 30's years old) with young children. You should have seen the snake line of parents trying to get their kids into the day care. The service consisted of a Christian Rock songs in the beginning and the end with a band that consisted of three electric guitars, several good singers. keyboards, and a big set of drums. The service was mostly a sermon by the pastor that lasted nearly 1.5 hours. Who would have thought young people would keep attention that long, but they did. It is an Evangelical Christian Church that emphasis the Bible and the Glory of God.
At the end of the service people quietly walked out the many doors where they dropped off their offerings and tithes in a box in front of the doors. Julie went to get Campbell so she could say Good-Bye to Mr. Joe and Miss Bonnie. She gave me a big smiling hug and she just smiled at Mr. Joe. We hugged and kissed Julie good bye and we started our way back to Houston about 11AM. We split the drive again and it was still another cloudless sparkling blue sky. There was a steady stream of traffic between Houston and Dallas in both directions. People sure do speed around here so I just followed the crowd.
We got back to Houston about 4PM where I unpacked and put everything away. About 6:30 we headed to Barry's Pizza where the servers were dressed up in costumes. Our guy, Rod, was dressed as a princess so I called him Rodberta the rest of the evening. Now we are back in the "honeymoon" studio suite watching the World Series. Joe is sound asleep next to me on the couch and Max is all stretched out and asleep on our bed.
The coming week will be a hard one starting at 1pm on Monday with Joe getting some labs done then meet with Dr Romaguera to go over the results and discuss the next plan which will be Part B of the chemo regimen of HyperCVD as an inpatient for four days. These will be different chemicals than Part A thus we can only pray that Joe reacts as well as he did with Part A. Joe is so worried about his white blood cells going up again but I told him that it will go down in time. We need to take it one day at a time and God will direct us on what to do. Joe will be admitted to MDACC late Monday afternoon.
Pray for the chemo to bring down his white blood cells and for his spleen to decrease to a normal size. Pray that the malignant lymph modes in his neck, chests and liver shrink and disappear. Prayer for the doctors and other medical personal.
Peace be with you and my God watch over all your loved ones,
Ciao,
Bonnie
MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11
Sunday, October 31, 2010
Friday, October 29, 2010
So many positives out weighed the negatives.
It was one of those days where you dread what the outcome of a meeting would be. The day could have started as if there were dark stormy clouds and high winds but the new day started with great brightness that made me look at the positives rather than the negatives. God was at work again in ways that we did not see coming.
With another great night's sleep for both Joe and I, we both enjoyed a marvelous hot shower. It was me first since Joe's arm has to be wrapped up with Seal and Press Plastic to prevent his dressing over his PICC from getting wet. Infections are the nemesis of patients going through chemo for lymphoma since that is what kills so many before they finish chemo. Wet dressing becomes a nesting ground for bacteria and viruses so we take good care of that site.
Upon showering Joe said Jennifer, my daughter in law, called me on my phone. She has not called she sent me a text message proudly announcing that granddaughter Emily, a first grader, had gotten straight A's on her report card and was getting an award for her accomplishments later in the day. Right after her message there was a message from Mike, my youngest son and her Daddy, also proudly texting me that Emily got straight A's on her first report card from big girl's school. I fondly remembered when my two sons, Keith and Mike, got great grades in school and how we celebrated those achievements and how proud I was with their results. I always asked them how they felt about any success they had to learn to do it for themselves and how it felt to be successful. The wheel has turned to them and their children. It is another great blessing from the Almighty. I texted back how thrilled Joe and I were and we would call and congratulate her later on that evening. Those messages alone would have made it a special positive day.
The positives kept happening. I had been concerned that I would not be able to get my new hearing aids adjusted at Costco in Dunwoody since I would be gone till after Thanksgiving which would be over 90 days since I purchased the new aids. If I did not like them, I could turn them in and get my money back but rather get different aids that I would like better. I had called and left a message the day before that I was not able to keep my Thursday appointment since Joe was in Houston until after Thanksgiving and we had moved temporarily to Houston. Costco hearing aid center had called me back and left a message that I would be able to visit the local Costco which Joe and I had already located. It was good news.
There was another voice message on my phone that left me speechless. Joe had taken a shower and got him unwrapped before I let him listen to the message from Caleb Clark, our Eastminster Presbyterian minister. Joe was emotionally touched by the message as I was. Caleb stated that he wanted to come and visit us in Houston on 11/6 for fellowship, serve us communion, represent the church membership and as a friend since we were away from home without a safety net of people to help us. Wow! Isn't that incredible! He was coming just for us and with the hearts and prayers of our church with him. We called him back thinking maybe he had forgotten that we would be in Houston and not Atlanta till after Thanksgiving. He laughed and said he knew that. We were concerned about the expense and his time but he shoved us off on that one. We welcomed him to come and we would also share a glorious lunch together. Caleb would also get to see our little "honeymoon" place where Joe and I are together all the time. Joys keep coming to us in so many ways.
As we drove over to MDACC for Joe's dressing change, the blood tests and exam , it became less dreadful for us. Sure we both were nervous but so far the day was very bright and that I was sure that this would be the outcome from the blood tests. I watched the sterile dressing change again so I could be certified next week by the Infusion Department to do it myself instead of a special trip to MDACC. We kind of like staying away from the place. I felt more comfortable about being able to do it. We found the Education Place and bought the DVD of the instructions on how to change the dressing. I do not want to be the one to cause infection of the PICC site.
Next stop was the FAST TRACK lab where they draw six vials of blood to be tested as well as get Joe's vital signs. It takes anywhere from one hour to two hours for the blood results to come in. Instead of hanging around in the Lymphoma Lounge where it is freezing cold, we headed to the cafeteria on the first floor to have lunch. Today it was Chick Fillet.
After lunch we headed back upstairs to wait for the appointment with the Physicians Assistant. It was now about 3PM. The lady said she had been calling Joe since 1:36PM since he did not get his vital signs completed and get a pager. It turns out that they give the patient a pager so they know when to come back after the lab tests were back. Lessons learned so that will not happen again.
Joe was nervous and for a change I was more calm than he was. There was just too many positive vibes of the day. Panic struck Joe when we saw the CBC results his white blood count (WBC) had gone from 65.7 on Monday up to 71.9 today , an increase of 9.4%. The PA asked Joe how he felt and he says they need to tell him instead. His RBC (red blood count) went down from 3.58 to 3.49, decrease of 9%. His Hemoglobin went down from 10.3 to 10.1, decrease of 2%. His Hematocrit went down from 35.3 to 34.1, decrease of 3.5%. His platelets took a big dive from a normal 165 to abnormal 116 but still not bad for someone who recently had chemo. The PA said that she had to discuss the results with Dr. Romaguera and we held our breaths. I could sense great anxiety from Joe and his immense disappointment that his WBC went up. The PA comes back and tells us that Joe can report back on Monday, get labs, see Dr. Romaguera and wait to be re-admitted to the hospital for Part B of the Hyper CVAD chemo without the "A" part which is Joe's normal 21 day cycle. Joe thought that it was bad news. I advised Joe that it was good news since Romaguera's assessment of the CBC tests was that Joe was stable. The variance since Monday was within decent ranges that he would not have to be re-admitted that day. Because I was calm and confident of that fact, Joe started to be less tense. There were too many positives in the day to think that this was a setback. Joe also knows that if I thought otherwise that I would have asked to see Dr Romaguera and I would have told Joe that I was concerned. I just had this calm over me that it was OK and convinced Joe. I did admit that I was also disappointed that the WBC did not go down as we had prayed for but it was not a huge difference.
Since Joe would not have to check back in till Monday, it meant that we had three full days off from being at MDACC. Yippee! It was great news and we would use those days to full advantage. I told Joe that I would love to drive up to Dallas and see Julie Campbell Stephens, her husband Russell and their 2 year old girl, Campbell. Julie is also pregnant with Lily who is due on 11/24. I would love to see our dear Julie pregnant.
Julie came into our lives via my career as a Mortgage Loan Officer at Bank of America. Julie was getting out of active duty Army and back into civilian life. She served our country. Her new job started within a week but her VA loan would not close for 30 days and she was going to commute from Columbus, GA to Norcross everyday. No way, I was going to let that happen to someone who served our country in Iraq. I offered her to stay with Joe and me until her home was ready to move in after her loan closed. She stayed and we enjoyed her so much. Max also adored her.
After a year she decided to moved to Anniston, Alabama where should would be in the active Army reserves. She bought another home there and I assisted her with that also. She was there only a short time and fell in love with Russell who works with a prominent government agency. She got married and moved to Dallas where Russell lives. In one year they started a family and now 2 years later another little girl is due. I would love to see her and Joe agreed that we could go to Dallas to visit. Now to ask, Miss Julie.
I e-mailed Miss Julie and she welcomed us grandly by inviting us for dinner and spend the night before we headed back to Houston on Sunday. She is an excellent cook and would make Joe one of his favorite meals. I gave her a couple of suggestions since she asked me. Julie nicknamed me her Atlanta Mama. She is tall, pretty, majestic and a very strong Christian lady who is fun and intelligent. What a joy to be able to see her and get away from Houston and the small studio apartment. Max would come with us since he is good around everyone.
Tonight we went over to Galleria Mall for the first time. The place is gigantic and so many La-De-Da stores that all I can do is just window shop since even their sale items would be outrageously priced. Name every big designer that you ever heard of and they were there. Dior, Chanel, Gucci, Baccarrat, Prada etc... We headed towards the large ice skating rink on the lower level where it is surrounded with places to eat. Joe wanted La Madeline's again so his wish was granted. We sat at the tables where one looks out at the smooth skating rink as the kids and people skate. It was entertaining but not as much as getting back to the studio to watch Game 2 of the World Series where the Giants blanked out the Texas Rangers by an amazing score of 9-0. Wow!
We headed to bed but I woke back up at 1:30AM since I was not tired anymore. It is the danger of taking naps in the afternoon. So instead of fighting to go back to sleep, I figured I would do my blog.
It was such a positive day with blessings raining down in multitudes. God continues to walk this walk with us with His son, Jesus, holding our hands. Tomorrow brings another new day. New blessings with shower down to keep us strong. Thank you so much to Joe's Prayer Army. You can see how your prayers are at work and how God has worked his special gifts into our lives.
Blessings to you and your families,
Bonnie
With another great night's sleep for both Joe and I, we both enjoyed a marvelous hot shower. It was me first since Joe's arm has to be wrapped up with Seal and Press Plastic to prevent his dressing over his PICC from getting wet. Infections are the nemesis of patients going through chemo for lymphoma since that is what kills so many before they finish chemo. Wet dressing becomes a nesting ground for bacteria and viruses so we take good care of that site.
Upon showering Joe said Jennifer, my daughter in law, called me on my phone. She has not called she sent me a text message proudly announcing that granddaughter Emily, a first grader, had gotten straight A's on her report card and was getting an award for her accomplishments later in the day. Right after her message there was a message from Mike, my youngest son and her Daddy, also proudly texting me that Emily got straight A's on her first report card from big girl's school. I fondly remembered when my two sons, Keith and Mike, got great grades in school and how we celebrated those achievements and how proud I was with their results. I always asked them how they felt about any success they had to learn to do it for themselves and how it felt to be successful. The wheel has turned to them and their children. It is another great blessing from the Almighty. I texted back how thrilled Joe and I were and we would call and congratulate her later on that evening. Those messages alone would have made it a special positive day.
The positives kept happening. I had been concerned that I would not be able to get my new hearing aids adjusted at Costco in Dunwoody since I would be gone till after Thanksgiving which would be over 90 days since I purchased the new aids. If I did not like them, I could turn them in and get my money back but rather get different aids that I would like better. I had called and left a message the day before that I was not able to keep my Thursday appointment since Joe was in Houston until after Thanksgiving and we had moved temporarily to Houston. Costco hearing aid center had called me back and left a message that I would be able to visit the local Costco which Joe and I had already located. It was good news.
There was another voice message on my phone that left me speechless. Joe had taken a shower and got him unwrapped before I let him listen to the message from Caleb Clark, our Eastminster Presbyterian minister. Joe was emotionally touched by the message as I was. Caleb stated that he wanted to come and visit us in Houston on 11/6 for fellowship, serve us communion, represent the church membership and as a friend since we were away from home without a safety net of people to help us. Wow! Isn't that incredible! He was coming just for us and with the hearts and prayers of our church with him. We called him back thinking maybe he had forgotten that we would be in Houston and not Atlanta till after Thanksgiving. He laughed and said he knew that. We were concerned about the expense and his time but he shoved us off on that one. We welcomed him to come and we would also share a glorious lunch together. Caleb would also get to see our little "honeymoon" place where Joe and I are together all the time. Joys keep coming to us in so many ways.
As we drove over to MDACC for Joe's dressing change, the blood tests and exam , it became less dreadful for us. Sure we both were nervous but so far the day was very bright and that I was sure that this would be the outcome from the blood tests. I watched the sterile dressing change again so I could be certified next week by the Infusion Department to do it myself instead of a special trip to MDACC. We kind of like staying away from the place. I felt more comfortable about being able to do it. We found the Education Place and bought the DVD of the instructions on how to change the dressing. I do not want to be the one to cause infection of the PICC site.
Next stop was the FAST TRACK lab where they draw six vials of blood to be tested as well as get Joe's vital signs. It takes anywhere from one hour to two hours for the blood results to come in. Instead of hanging around in the Lymphoma Lounge where it is freezing cold, we headed to the cafeteria on the first floor to have lunch. Today it was Chick Fillet.
After lunch we headed back upstairs to wait for the appointment with the Physicians Assistant. It was now about 3PM. The lady said she had been calling Joe since 1:36PM since he did not get his vital signs completed and get a pager. It turns out that they give the patient a pager so they know when to come back after the lab tests were back. Lessons learned so that will not happen again.
Joe was nervous and for a change I was more calm than he was. There was just too many positive vibes of the day. Panic struck Joe when we saw the CBC results his white blood count (WBC) had gone from 65.7 on Monday up to 71.9 today , an increase of 9.4%. The PA asked Joe how he felt and he says they need to tell him instead. His RBC (red blood count) went down from 3.58 to 3.49, decrease of 9%. His Hemoglobin went down from 10.3 to 10.1, decrease of 2%. His Hematocrit went down from 35.3 to 34.1, decrease of 3.5%. His platelets took a big dive from a normal 165 to abnormal 116 but still not bad for someone who recently had chemo. The PA said that she had to discuss the results with Dr. Romaguera and we held our breaths. I could sense great anxiety from Joe and his immense disappointment that his WBC went up. The PA comes back and tells us that Joe can report back on Monday, get labs, see Dr. Romaguera and wait to be re-admitted to the hospital for Part B of the Hyper CVAD chemo without the "A" part which is Joe's normal 21 day cycle. Joe thought that it was bad news. I advised Joe that it was good news since Romaguera's assessment of the CBC tests was that Joe was stable. The variance since Monday was within decent ranges that he would not have to be re-admitted that day. Because I was calm and confident of that fact, Joe started to be less tense. There were too many positives in the day to think that this was a setback. Joe also knows that if I thought otherwise that I would have asked to see Dr Romaguera and I would have told Joe that I was concerned. I just had this calm over me that it was OK and convinced Joe. I did admit that I was also disappointed that the WBC did not go down as we had prayed for but it was not a huge difference.
Since Joe would not have to check back in till Monday, it meant that we had three full days off from being at MDACC. Yippee! It was great news and we would use those days to full advantage. I told Joe that I would love to drive up to Dallas and see Julie Campbell Stephens, her husband Russell and their 2 year old girl, Campbell. Julie is also pregnant with Lily who is due on 11/24. I would love to see our dear Julie pregnant.
Julie came into our lives via my career as a Mortgage Loan Officer at Bank of America. Julie was getting out of active duty Army and back into civilian life. She served our country. Her new job started within a week but her VA loan would not close for 30 days and she was going to commute from Columbus, GA to Norcross everyday. No way, I was going to let that happen to someone who served our country in Iraq. I offered her to stay with Joe and me until her home was ready to move in after her loan closed. She stayed and we enjoyed her so much. Max also adored her.
After a year she decided to moved to Anniston, Alabama where should would be in the active Army reserves. She bought another home there and I assisted her with that also. She was there only a short time and fell in love with Russell who works with a prominent government agency. She got married and moved to Dallas where Russell lives. In one year they started a family and now 2 years later another little girl is due. I would love to see her and Joe agreed that we could go to Dallas to visit. Now to ask, Miss Julie.
I e-mailed Miss Julie and she welcomed us grandly by inviting us for dinner and spend the night before we headed back to Houston on Sunday. She is an excellent cook and would make Joe one of his favorite meals. I gave her a couple of suggestions since she asked me. Julie nicknamed me her Atlanta Mama. She is tall, pretty, majestic and a very strong Christian lady who is fun and intelligent. What a joy to be able to see her and get away from Houston and the small studio apartment. Max would come with us since he is good around everyone.
Tonight we went over to Galleria Mall for the first time. The place is gigantic and so many La-De-Da stores that all I can do is just window shop since even their sale items would be outrageously priced. Name every big designer that you ever heard of and they were there. Dior, Chanel, Gucci, Baccarrat, Prada etc... We headed towards the large ice skating rink on the lower level where it is surrounded with places to eat. Joe wanted La Madeline's again so his wish was granted. We sat at the tables where one looks out at the smooth skating rink as the kids and people skate. It was entertaining but not as much as getting back to the studio to watch Game 2 of the World Series where the Giants blanked out the Texas Rangers by an amazing score of 9-0. Wow!
We headed to bed but I woke back up at 1:30AM since I was not tired anymore. It is the danger of taking naps in the afternoon. So instead of fighting to go back to sleep, I figured I would do my blog.
It was such a positive day with blessings raining down in multitudes. God continues to walk this walk with us with His son, Jesus, holding our hands. Tomorrow brings another new day. New blessings with shower down to keep us strong. Thank you so much to Joe's Prayer Army. You can see how your prayers are at work and how God has worked his special gifts into our lives.
Blessings to you and your families,
Bonnie
Wednesday, October 27, 2010
Two days FREE for rest before the STORM
The past two days, Tuesday and Wednesday, have been islands in the gentle stream where there is calmness and time to regroup. I am delighted to say that I am finally at the end of the miserable virus with some coughing here and there as well as blowing my raw nose. Even the monstrous cold sores are just about gone. Praise God for these blessings! Several nights of solid sleep with only one coughing episode each day was God sent and needed. I even had several good long naps in the afternoon. It is what my body needed desperately. I think I am going to need some real strength coming up. Joe goes back to MDACC for some CBC tests. I know that we will both hold our breath and have anxiety. If the white blood cells and lymphocytes go up a bunch, they will admit Joe back into the hospital for immediate chemo instead of waiting to admit him at his normal appointment on Monday. The Part A chemo that Joe got was suppose to suppress the white blood cells (WBC) but they had gone up since the end of the first round of chemo. We are praying for improvement and praying that we will be strong in handling whatever happens. God surely is directing us. Part B of the chemo regimen has two chemicals:Methotrexate and Cytarabine. When one reads the side effects, you want to run away and scream, "Are you crazy?" One must place trust in the doctors and with God most of all. Tomorrow is an important day.
The last two days have been laid back and taking it easy. Joe continues to feel great (that has got to mean something is working, you would think!) He has some swolleness in his left foot still but it has gone down. Today he said he felt some weakness in his left leg muscle but it did not slow him down.
Yesterday we did some minor shopping then took Max to the Danny Jackson Family Dog Park which was so cool. There are two fenced in sections. One is for dogs under 20 pounds and the other for dogs over 20 pounds. Each area has a dog swimming pool, benches for owners under the shade. I suppose there were about 15 dogs there running loose and having a grand time. No biting or growling at each other, the dogs just played and chased balls. Some wanted attention but none jumped up on anyone. The owners with their dogs were so friendly and Joe and I talked to a few about traveling and local restaurants. Max did not go into the pool or anywhere near it. There was a small English Bulldog about half the size of my son's Mike's bulldog. Her name was Sophie and well behaved as well as lovable. We will go back with Max another day but will stay away during the weekends when they say it is jammed.
After dropping Max off at the studio, we took a nap then headed for a late lunch and picked out an Italian restaurant with red checkered tablecloths. Joe had spaghetti with tomato sauce with some garlic bread and I had an individual cheese pizza. It was good and we may be back. Since it was off hours, there was only one other table with a couple of people.
Since there were no baseball games on TV, we decided that it would be a great night to see a movie since there would also not be very many people there which is important for Joe so he does not catch some virus. How he didn't catch mine, is a real miracle! I was able to locate the Edwards Regal Theatre off the Katy Freeway with some trouble since there was no direct exit to the theatre. Thankfully I have a good sense of direction and was able to get to it. What a beautiful clean theatre! It was really surprising how nice it was. It was more like going to an Opera House or a NY Broadway Theatre. We decided to see "The Social Network" which had great reviews from professionals and regular people. It was a heck of an intriguing story with a moral ending. Don't screw your friends! After the show it was about 9:30 and we were hungry. Across the breezeway there was a restaurant called Red Robin who supposedly sold gourmet hamburgers which is a dangerous statement to make so we gave it a try. My first question to the waiter was, "Will you cook my hamburger the way I want it cooked, medium rare?" He was honest stating that they cook their hamburgers medium well and well done. GROAN! I asked in my best nice voice to have the cook the burger as least as he could get away with. Within a few minutes, our cheeseburgers came off the grill sizzling hot and I smiled as I bit into the burger. It was medium, juicy, flavorful and hot. Both Joe and I were happy customers. We were the last customers to leave which was a good thing since it meant no many people around.
Today is Wednesday and today was even more laid back than Tuesday. After flushing Joe's PICC lines as I do every morning before we venture out. This morning it was time to try Panera Bread around the corner on the other side of the block. Nicely decorated with some great looking pastries and large bagels we finally found a place that is a happy medium between Joe and me. He loved the coffee and the Cinnamon muffin. I enjoyed my toasted sesame seed bagel with light cream cheese. After a leisurely light breakfast we headed to MicroCenter since Joe wanted to buy an easy manual for the iPhone features. I also got a screen cleaner. We looked for a label maker but they were too expensive so we headed to Costco and bought a cheaper one made by Brothers as well as a nice long sleeve shirt for Joe. It is hard not to just buy one thing. Shameful! We looked for the Ocean Spray Apple Juice that Joe craves but alas they did not carry it. I looked in so many stores so I suppose that we will have to order it on-line.
This afternoon Joe took Max with him as he wanted to do some more detail work on the Lexus. Joe loves his cars sparkling clean that they look new. He does an amazing job. He said Max sat on the back seat of the Lexus and took a snooze.
Now it is almost 7PM CST which means the World Series Game will be starting soon and our grand entertainment for the night. About 9PM I will pick up a Chinese dinner order at P F Changs about 2 miles from our studio. Yummy!
I am so grateful for the last two days where we did not have to go to MDACC. Tomorrow could open a new scary chapter but Joe and I are in it together to win this fight. We are enjoying our time together and just taking it easy.
Ciao,
The last two days have been laid back and taking it easy. Joe continues to feel great (that has got to mean something is working, you would think!) He has some swolleness in his left foot still but it has gone down. Today he said he felt some weakness in his left leg muscle but it did not slow him down.
Yesterday we did some minor shopping then took Max to the Danny Jackson Family Dog Park which was so cool. There are two fenced in sections. One is for dogs under 20 pounds and the other for dogs over 20 pounds. Each area has a dog swimming pool, benches for owners under the shade. I suppose there were about 15 dogs there running loose and having a grand time. No biting or growling at each other, the dogs just played and chased balls. Some wanted attention but none jumped up on anyone. The owners with their dogs were so friendly and Joe and I talked to a few about traveling and local restaurants. Max did not go into the pool or anywhere near it. There was a small English Bulldog about half the size of my son's Mike's bulldog. Her name was Sophie and well behaved as well as lovable. We will go back with Max another day but will stay away during the weekends when they say it is jammed.
After dropping Max off at the studio, we took a nap then headed for a late lunch and picked out an Italian restaurant with red checkered tablecloths. Joe had spaghetti with tomato sauce with some garlic bread and I had an individual cheese pizza. It was good and we may be back. Since it was off hours, there was only one other table with a couple of people.
Since there were no baseball games on TV, we decided that it would be a great night to see a movie since there would also not be very many people there which is important for Joe so he does not catch some virus. How he didn't catch mine, is a real miracle! I was able to locate the Edwards Regal Theatre off the Katy Freeway with some trouble since there was no direct exit to the theatre. Thankfully I have a good sense of direction and was able to get to it. What a beautiful clean theatre! It was really surprising how nice it was. It was more like going to an Opera House or a NY Broadway Theatre. We decided to see "The Social Network" which had great reviews from professionals and regular people. It was a heck of an intriguing story with a moral ending. Don't screw your friends! After the show it was about 9:30 and we were hungry. Across the breezeway there was a restaurant called Red Robin who supposedly sold gourmet hamburgers which is a dangerous statement to make so we gave it a try. My first question to the waiter was, "Will you cook my hamburger the way I want it cooked, medium rare?" He was honest stating that they cook their hamburgers medium well and well done. GROAN! I asked in my best nice voice to have the cook the burger as least as he could get away with. Within a few minutes, our cheeseburgers came off the grill sizzling hot and I smiled as I bit into the burger. It was medium, juicy, flavorful and hot. Both Joe and I were happy customers. We were the last customers to leave which was a good thing since it meant no many people around.
Today is Wednesday and today was even more laid back than Tuesday. After flushing Joe's PICC lines as I do every morning before we venture out. This morning it was time to try Panera Bread around the corner on the other side of the block. Nicely decorated with some great looking pastries and large bagels we finally found a place that is a happy medium between Joe and me. He loved the coffee and the Cinnamon muffin. I enjoyed my toasted sesame seed bagel with light cream cheese. After a leisurely light breakfast we headed to MicroCenter since Joe wanted to buy an easy manual for the iPhone features. I also got a screen cleaner. We looked for a label maker but they were too expensive so we headed to Costco and bought a cheaper one made by Brothers as well as a nice long sleeve shirt for Joe. It is hard not to just buy one thing. Shameful! We looked for the Ocean Spray Apple Juice that Joe craves but alas they did not carry it. I looked in so many stores so I suppose that we will have to order it on-line.
This afternoon Joe took Max with him as he wanted to do some more detail work on the Lexus. Joe loves his cars sparkling clean that they look new. He does an amazing job. He said Max sat on the back seat of the Lexus and took a snooze.
Now it is almost 7PM CST which means the World Series Game will be starting soon and our grand entertainment for the night. About 9PM I will pick up a Chinese dinner order at P F Changs about 2 miles from our studio. Yummy!
I am so grateful for the last two days where we did not have to go to MDACC. Tomorrow could open a new scary chapter but Joe and I are in it together to win this fight. We are enjoying our time together and just taking it easy.
Ciao,
Monday, October 25, 2010
Today is really Monday 10/25/10. Health update
Monday is the start of a new week and hopefully it would start brightly.
The day started with a stop at a fancy STARBUCKS that Joe wanted to try across from the Galleria. It was the biggest one that we ever have visited. Joe enjoyed his coffee but the two muffins were not fresh. A short stop at Target to get some more paper towels and Windex. The area around the Galleria is so pretty with manicured trees, bushes and gardens. The light poles are shiny chrome and the street signs are hung in a big circle with the crossing street's name. Also along the roads are double chrome arches that go from one side of the road to the other. The modern sparkling tall marble buildings along with so many upscale shops everywhere. Joe loves this area of town. Great choice! It is so pretty at night with all the lights ablaze!
We headed to the Brown Bag Deli again for their wonderful Roast Beef sandwiches before the 1:30 appointment at MDACC for the blood tests. Joe's next appointment was with Dr. Romaguera at 4PM to go over his progress. We had a bunch of time to kill so I just drove around and explored what was in Hermann Park and the Museum District. This area reminded me of the grand parks, statues, and fountains in Europe with majestic knobby oak trees adorning the area. Colorful flowers were everywhere where the public could enjoy. We stopped at the Garden Club and walked around the gardens with rows and rows of all kinds of roses from the simple ones to the majestic ones. I loved the bare tan smooth bark of some trees that reminded me of mahogany. I saw a large preying mantis slowing making its way up the smooth trunk of the tree. Fascinating to watch every movement of this majestic green long legged bug. Joe sat on a bench under the shade of a large tree and a nearby fountain. I laid my head on his lap as he softly stroked my head as the strong breeze kept us comfortable. It was a very special memorable moment that I will treasure in my dreams.
It was time to head back to the hospital to see Dr. Romaguera. We saw two medical personnel first who examine Joe and ask a hundred questions and confused us with their statements as if Joe was going to be admitted today for some more chemo a week early. Dr. Romaguera finally comes in and looks at Joe and has a concerned serious look. The vibes were not good since we both felt it. The Doc asked Joe how he was doing and Joe said he felt great and the best he felt in a very long time. He asked Joe if he thought his spleen shrunk and Joe and I thought it had since Joe had a healthy appetite and was able to eat full meals, three times a day. Dr Romaguera stated that Joe's White Blood Count had increased from 35 to 67 and that with the chemo, this is not suppose to happen. Chemo is suppose to make the WBC decrease and he felt that the Lymphoma was taken over his body. He felt that Joe should be admitted today for Part B of the chemotherapy and gave us the information about the two chemos that would be injected. I pointed out to Dr Romaguera to look at Joe's platelets at 165 which was in the normal range and that had not happen for a year or so. Also his hemacrit improved to almost 36 as well as his hemaglobin and that Joe felt great. We talked for over an hour with the doctor and he also conferred with another colleague for his opinion. We all agreed that while the spleen from the outside only deceased 3 cm that it seemed logical that the unseen width had decreased since Joe was able to eat more normal. We came to the conclusion that the stored white blood cells in Joe's spleen was leaving it and going into the blood stream thus causing the WBC to increase. It was agreed to wait till Thursday when another blood CBC test would be done and if it increased substantially that Joe would be admitted for 4 days of Part B chemo with two new chemicals which is the normal course. They would do it sooner rather than wait till next Monday when he would be re-admitted as an inpatient for four days of chemo. It is a wait and see. Dr R told me to stop injecting the Neupogin and stop the two supplements since they could distort the results. We agreed. We need your prayers to continue and pray that the lymphoma is not getting worse and taking more control of Joe's body.
We did not leave the hospital till about 6:15 and walked to the wrong parking garage when the coin did not work in the machine. We had a good laugh at that one trying to remember which of the huge garages we parked in. From now on I will park in the same parking garage so we do not screw up again.
On the way home we stopped at Randall's Supermarket to see if they had the apple juice that Joe craved but alas they did not have it either so Joe got a different brand so hopefully he will like it. He will need to drink a heck of a bunch of liquids for this next round of chemo since it can badly effect the kidneys and other vital organs. The side effects would scare everyone if you read them all but we are in the hands of God and MDACC
It was a tense day but when we arrived at the hotel there was a stack of cards waiting that picked up our spirit. Thank you everyone. There was a Get Well signed sheet from our church members where we enjoyed all the little get well notes from the people we love. What a great congregation! We are grateful for such a caring and loving group of church members. I will taped them to the wall with the others to keep remembering all the people's prayers and sweet words.
I can not believe that we have the next two full days off where we do not have to go to the hospital. I look forward to the new adventures and happenings that we will find in the Houston area.
CAUGHT UP! I still have the cough and congestion but it is better.
May the peace of the Lord be with you and your loved ones,
Ciao,
Bonnie
The day started with a stop at a fancy STARBUCKS that Joe wanted to try across from the Galleria. It was the biggest one that we ever have visited. Joe enjoyed his coffee but the two muffins were not fresh. A short stop at Target to get some more paper towels and Windex. The area around the Galleria is so pretty with manicured trees, bushes and gardens. The light poles are shiny chrome and the street signs are hung in a big circle with the crossing street's name. Also along the roads are double chrome arches that go from one side of the road to the other. The modern sparkling tall marble buildings along with so many upscale shops everywhere. Joe loves this area of town. Great choice! It is so pretty at night with all the lights ablaze!
We headed to the Brown Bag Deli again for their wonderful Roast Beef sandwiches before the 1:30 appointment at MDACC for the blood tests. Joe's next appointment was with Dr. Romaguera at 4PM to go over his progress. We had a bunch of time to kill so I just drove around and explored what was in Hermann Park and the Museum District. This area reminded me of the grand parks, statues, and fountains in Europe with majestic knobby oak trees adorning the area. Colorful flowers were everywhere where the public could enjoy. We stopped at the Garden Club and walked around the gardens with rows and rows of all kinds of roses from the simple ones to the majestic ones. I loved the bare tan smooth bark of some trees that reminded me of mahogany. I saw a large preying mantis slowing making its way up the smooth trunk of the tree. Fascinating to watch every movement of this majestic green long legged bug. Joe sat on a bench under the shade of a large tree and a nearby fountain. I laid my head on his lap as he softly stroked my head as the strong breeze kept us comfortable. It was a very special memorable moment that I will treasure in my dreams.
It was time to head back to the hospital to see Dr. Romaguera. We saw two medical personnel first who examine Joe and ask a hundred questions and confused us with their statements as if Joe was going to be admitted today for some more chemo a week early. Dr. Romaguera finally comes in and looks at Joe and has a concerned serious look. The vibes were not good since we both felt it. The Doc asked Joe how he was doing and Joe said he felt great and the best he felt in a very long time. He asked Joe if he thought his spleen shrunk and Joe and I thought it had since Joe had a healthy appetite and was able to eat full meals, three times a day. Dr Romaguera stated that Joe's White Blood Count had increased from 35 to 67 and that with the chemo, this is not suppose to happen. Chemo is suppose to make the WBC decrease and he felt that the Lymphoma was taken over his body. He felt that Joe should be admitted today for Part B of the chemotherapy and gave us the information about the two chemos that would be injected. I pointed out to Dr Romaguera to look at Joe's platelets at 165 which was in the normal range and that had not happen for a year or so. Also his hemacrit improved to almost 36 as well as his hemaglobin and that Joe felt great. We talked for over an hour with the doctor and he also conferred with another colleague for his opinion. We all agreed that while the spleen from the outside only deceased 3 cm that it seemed logical that the unseen width had decreased since Joe was able to eat more normal. We came to the conclusion that the stored white blood cells in Joe's spleen was leaving it and going into the blood stream thus causing the WBC to increase. It was agreed to wait till Thursday when another blood CBC test would be done and if it increased substantially that Joe would be admitted for 4 days of Part B chemo with two new chemicals which is the normal course. They would do it sooner rather than wait till next Monday when he would be re-admitted as an inpatient for four days of chemo. It is a wait and see. Dr R told me to stop injecting the Neupogin and stop the two supplements since they could distort the results. We agreed. We need your prayers to continue and pray that the lymphoma is not getting worse and taking more control of Joe's body.
We did not leave the hospital till about 6:15 and walked to the wrong parking garage when the coin did not work in the machine. We had a good laugh at that one trying to remember which of the huge garages we parked in. From now on I will park in the same parking garage so we do not screw up again.
On the way home we stopped at Randall's Supermarket to see if they had the apple juice that Joe craved but alas they did not have it either so Joe got a different brand so hopefully he will like it. He will need to drink a heck of a bunch of liquids for this next round of chemo since it can badly effect the kidneys and other vital organs. The side effects would scare everyone if you read them all but we are in the hands of God and MDACC
It was a tense day but when we arrived at the hotel there was a stack of cards waiting that picked up our spirit. Thank you everyone. There was a Get Well signed sheet from our church members where we enjoyed all the little get well notes from the people we love. What a great congregation! We are grateful for such a caring and loving group of church members. I will taped them to the wall with the others to keep remembering all the people's prayers and sweet words.
I can not believe that we have the next two full days off where we do not have to go to the hospital. I look forward to the new adventures and happenings that we will find in the Houston area.
CAUGHT UP! I still have the cough and congestion but it is better.
May the peace of the Lord be with you and your loved ones,
Ciao,
Bonnie
Catching up now, it is Wednesday 10/20/10 and I take it all the way to Sunday
Setting up our temporary home was the focus of Wednesday. We needed supplies for the place. Starbucks was the first destination since that is a must for Joe. He loves Starbucks cafe mild with one of their pastries. I am a Long Island, NY bagel gal so I go for Joe. Our next stop was Target which was nearly directly across the street. There was limited parking since the parking lot was being repaved. We purchased some elastic shorts for Joe since the ones he has fall off of him till he looks like a hip hop kid with his underwear showing. We also got household items to clean up our "newlywed" home. I snatched four blinding bright ugly but soft yellow bath towels since the hotel's are hard and abrasive. What a steal at $1.74 each! The reason they were cheap was because they were ugly. Our next stop was COSTCO for paper towels and whatever. CVS was for the small antibacterial with aloe bottles that Joe likes, the box of Neupogin prescription and of course a few more miscellaneous items. Why is it, I can not just buy one thing? Next to find a Walmart which was way out of the way but Joe wanted a laundry basket just like the one we have at home. FOUND! Next stop was the hospital to track down missing cards and boxes. I was able to get a pile of cards but failed at finding the boxes after also running to both ends of the hospital where to the nurse's station where Joe was a patient, No Luck! I started to get some nasty painful large cold sores on both sides of my upper lip so I started the Abreva treatment. Eating and drinking hurt now. Sometimes these various trials of life hit all at the same time.
We had a delightful light lunch at Le Madelines where we both had a cup of their delicious Tomato Basil Soup which was perfect for my cold. I had half a tuna salad sandwich but ate only half of it since my stomach was still a mess. Joe adored his potato pancake (I forget the French name) with a delectable mushroom sauce on the side. His appetite is much better than it was before which is a goof thing since he weighs only 172 pounds on his 6 foot frame.
Now it was after 2PM where we were now allowed to move to our new room on the top floor. The location was perfect on a quiet wing and with two windows that look out to the west to enjoy the pretty Texas sunset as well as the Galleria area skyrises. Joe got one of the hotel carts and started moving our stuff which took four trips. My job was to put it all away in the drawers and cabinets logically. The challenge was to set up cabinets just for meds. Drew and Josephine had purchased Joe a 7 day AM and PM medical pill organizer which was perfect. After several hours of unpacking and putting things away, we both took a needed nap. One thing that I could not locate here in Houston that Joe wanted was Ocean Spray APPLE juice in the small bottles (not Cran-Apple, just plain APPLE). If someone finds some, please ship it to us!
Our entertainment in the evenings have been watching the baseball payoff games which we both enjoyed even though our beloved Braves were out of it. We ordered pizza in and we enjoyed just being together on the couch, eating and watching the game with Max laying at our feet patiently waiting for his treat of leftovers. It was comfortable, felt so right that the three of us were right then and there. Joe was happy and it showed.
Thursday was a day of medical appointments at the hospital with lab tests and meeting with the head clinical nurse who was pleased with Joe's adjustment to the chemo. The male nurse told us that Joe's magnesium level was low and that he needed to take a supplement. More pills added to the pill organizer. There seems to be enough there for a 1200 calorie diet each day. Today I tried a different method of tracking down the missing packages and stopped by the information desk. The clerk tracked down the person who had signed for the packages but she was off today. I stated that there had to be someone else who could locate them who was in the same department. It took about an hour but the four missing packages were delivered to us as we sat in the Aquarium Lobby at MD Anderson Cancer Center. I had also stopped by the MDACC post office in the building and gave them our change of address for any other mail. They handed me more cards. Joe and I both love getting mail and reading the cards together and count our blessings.
Later that afternoon I opened the cards from our friends and Joe looked at each one of them and was so touched by each and every one of them. I taped them to the edge of a wall where they are all lined up on the edge of the wall to remind us of all the good kinds words that keep giving the boost Joe needs. When we sit on the coach we can see the cards as a decorative piece of art. The hotel as free WIFI so Joe has his laptop and I have my mini one to keep up with everything including Joe's massive medical appointment schedule.
Thursday night I got Chinese food take out from a restaurant in Houston's Chinatown. I ordered won ton soup for me, hot and sour soup for Joe, pot stickers, lightly fried shrimp. We were not crazy about their version of both soups but the lightly fried shrimp were great as well as the creamed cheese crab cakes (ragoons, or something like that). Joe's fortune cookie was perfect. It said "Remember three months from this date, Good things are in store for you." I taped the God sent message on a lamp to remember.
Each morning before venturing out I would flush Joe's PICC lines like a nursing pro and daily injecting the Neupogin without him feeling it. It helped that the needle is very small. When Joe gets ready to take a shower, I have to take some Glad Press N Seal and wrapped it around his upper right arm to prevent the PICC dressing from getting wet. If it gets wets, the dressing has to be replaced which means a special trip to MDACC. I am getting better at wrapping Joe up like a sealed mummy. I had to shave the arms to get rid of the hair so when any tape that needs to come off will not hurt him. Oh, I had purchased Joe and Braun electric razor at COSTCO last week when we found out that he would not be able use a sharp edge razor. He loves it and it really shaves him good. It also made it easier to shaved the hair off his arm.
Friday morning Joe had more visits to MDACC which one was to have the weekly change of the PICCs and dressing at the Infusion department. I watched carefully how they do it since I am still not 100% confident to be certified to do it myself since it is very detailed and it is done sterile. It is quite a detailed event. Joe had several other things done and then our afternoon was free. We had the best lunch at the Brown Bag Deli with tender medium rare roast beef on a soft wheat roll. It is located across from Le Madeline where we had lunch the other day. It is located on Kirby Street halfway between the hotel and MDACC. It is also an area of great shops including Chicos.
Friday night we had take out dinner from Maggianos with fried calamari, meat lasagna and tiramasu. TBS has been blocked out in broadcasting the Yankee/Ranger game because of their stupid dispute. We attempted to buy the $9.95 broadcast on mlb.com but had huge difficulty loading it. Joe ate the dinner while I had their tech support on the phone for an hour to no avail, The bandwidth at the hotel is not wide enough so I requested our money back. We shall see if we get it or I will dispute the charge since I have a trouble ticket number. The food was cold by the time I got to it. Microwaved heated up calamari is not the same. The lasagna was Ok but the best part was the tiramasu. Joe and I kept up with the game via ESPN on what was going on each inning. It was the best we could do. The Rangers won and I was happy for them but at least the Giant/Philly game the next night was on FOX so we would be able to see it. Right!
Saturday morning we rose early since Joe was to get the other half of the chemo "V" as an out patient. The staff was great and treated everyone like a VIP. Joe laid on the bed and I sat in the easy chair. They gave him some anti nausea and other stuff for the first 30 minutes then she turned on the "V" drip. Both of us fell asleep and snored as if we were a chorus. What a sight to see and hear! Joe felt woozy but still was pretty good. The nurse told him the most common side effect was constipation and to take a stool softener with laxative to prevent that. I had some at the hotel but gave him only one pill. Joe said THANK GOODNESS for giving him only one. It works!
Afterwards we went to Goode's BBQ on Kirby that was always jammed packed with cars. The music was blaring real twangy country music outside an inside. The place had great atmosphere and pretty good BBQ but nothing like Smokin Gold BBQ in Dahlonega. I am sure we will come back to this place to try their ribs and brisket. They had sold out of their ribs by the time we got there.
Saturday night Joe wanted to eat out and not bring food in. I had read an article in one of the Houston magazines like Creative Loafing of a place located in the Heights area of Houston called Zelko's Cafe and Joe was craving a good hamburger. The article had raved about the BOSS Burger which was a chargilled medium rare half burger with crisp bacon, melted cheddar, carmelized onions on a great roll with parmesan garlic fries. The place has fab vibes with a lovely bar, great warm wooden walls with close tables with friendly waiters and customers. The Heights area reminds me of Virginia Highlands before it became the "in" place to go to. Great Meal, Great Service, Great Vibes, Great Section of Town, with a Great friendly crowd. We followed the baseball game on the iPhone of the Giants/Phillies. Most were rooting for the Phillies but I was rooting for the Giants. We got to the hotel to watch the last two innings. Lo and Behold with the top of the ninth, the score 3-2, two outs for the Phillies, with two men on base and Ryan Howard up to bat. The Satellite TV went down. I could not believe the timing which was absolutely the worse. 10 minutes later the Giants had already won and had chased off the field for their celebration. Oh well! I told the front desk that their satellite system SUCKED! The guy laughed at me!
On Sunday we attended St Philips Presbyterian Church around the corner from us. It is a bright clean lines church. The organ and choir is in the back of the church up in the balcony. Both Joe and I prefer to have it the way our church has it with the choir and music up front. The preacher is Bernard Nord with beautiful head of white hair with a great speaking voice and charisma. We were greeted at the door by several greeters and we told them who we were and where we came from. They gave us a goody bag as a welcome gift. Sweet. We sat in the next to last pew since I still had my nasty hacking cough and if I started to have a spasm I could leave quickly. After the passing of the Peace and the preacher introduced us to the rest of the members which was sweet and funny. The preacher has a son who lives in Monroe, Ga. The couple sitting behind us was visiting the church for the first time since their Presbyterian Church was closing and merging with St Philips. Membership issues seem to be an issue in Houston also. The service was very similar to our church with no surprises. They also were having a membership meeting after the service to elect the next slate of officers. Like our church, I enjoyed the children's sermon at the altar's steps. The kids seemed to love the attention.
Sunday was a take it easy day with Joe and I watching football games and reading the Sunday Paper. Joe spit cleaned our car as I took a nap for several hours. For dinner we went to OUTBACK STEAKS which Joe enjoys so much. He had the ribeye steak Pittsburgh style and I had the small fillet the same way. I thought my fillet was a bit grainy and declined the offer from the manager to exchange it but I thought I was being overly fussy. It turned out that half of my fillet was inedible. I must have gotten the end of the fillet cut but I did enjoy my glass of Pinot Grigio and my Caesar Salad which Joe was not allowed to have. I missed seeing Desperate Housewives but I did get to see the wonderful Brothers and Sisters. I do not like Central Standard Time (CST) since I miss so many of the prime TV shows since they come on an hour earlier here. I am out of my rhythm. I was able to to catch up on part of my blog which was painful to write. We headed to bed at midnight. Again I had a tough night with the dry itching cough every few minutes.
I will start a new blog entry of today's events since there were some important health updates on Joe.
Ciao!
We had a delightful light lunch at Le Madelines where we both had a cup of their delicious Tomato Basil Soup which was perfect for my cold. I had half a tuna salad sandwich but ate only half of it since my stomach was still a mess. Joe adored his potato pancake (I forget the French name) with a delectable mushroom sauce on the side. His appetite is much better than it was before which is a goof thing since he weighs only 172 pounds on his 6 foot frame.
Now it was after 2PM where we were now allowed to move to our new room on the top floor. The location was perfect on a quiet wing and with two windows that look out to the west to enjoy the pretty Texas sunset as well as the Galleria area skyrises. Joe got one of the hotel carts and started moving our stuff which took four trips. My job was to put it all away in the drawers and cabinets logically. The challenge was to set up cabinets just for meds. Drew and Josephine had purchased Joe a 7 day AM and PM medical pill organizer which was perfect. After several hours of unpacking and putting things away, we both took a needed nap. One thing that I could not locate here in Houston that Joe wanted was Ocean Spray APPLE juice in the small bottles (not Cran-Apple, just plain APPLE). If someone finds some, please ship it to us!
Our entertainment in the evenings have been watching the baseball payoff games which we both enjoyed even though our beloved Braves were out of it. We ordered pizza in and we enjoyed just being together on the couch, eating and watching the game with Max laying at our feet patiently waiting for his treat of leftovers. It was comfortable, felt so right that the three of us were right then and there. Joe was happy and it showed.
Thursday was a day of medical appointments at the hospital with lab tests and meeting with the head clinical nurse who was pleased with Joe's adjustment to the chemo. The male nurse told us that Joe's magnesium level was low and that he needed to take a supplement. More pills added to the pill organizer. There seems to be enough there for a 1200 calorie diet each day. Today I tried a different method of tracking down the missing packages and stopped by the information desk. The clerk tracked down the person who had signed for the packages but she was off today. I stated that there had to be someone else who could locate them who was in the same department. It took about an hour but the four missing packages were delivered to us as we sat in the Aquarium Lobby at MD Anderson Cancer Center. I had also stopped by the MDACC post office in the building and gave them our change of address for any other mail. They handed me more cards. Joe and I both love getting mail and reading the cards together and count our blessings.
Later that afternoon I opened the cards from our friends and Joe looked at each one of them and was so touched by each and every one of them. I taped them to the edge of a wall where they are all lined up on the edge of the wall to remind us of all the good kinds words that keep giving the boost Joe needs. When we sit on the coach we can see the cards as a decorative piece of art. The hotel as free WIFI so Joe has his laptop and I have my mini one to keep up with everything including Joe's massive medical appointment schedule.
Thursday night I got Chinese food take out from a restaurant in Houston's Chinatown. I ordered won ton soup for me, hot and sour soup for Joe, pot stickers, lightly fried shrimp. We were not crazy about their version of both soups but the lightly fried shrimp were great as well as the creamed cheese crab cakes (ragoons, or something like that). Joe's fortune cookie was perfect. It said "Remember three months from this date, Good things are in store for you." I taped the God sent message on a lamp to remember.
Each morning before venturing out I would flush Joe's PICC lines like a nursing pro and daily injecting the Neupogin without him feeling it. It helped that the needle is very small. When Joe gets ready to take a shower, I have to take some Glad Press N Seal and wrapped it around his upper right arm to prevent the PICC dressing from getting wet. If it gets wets, the dressing has to be replaced which means a special trip to MDACC. I am getting better at wrapping Joe up like a sealed mummy. I had to shave the arms to get rid of the hair so when any tape that needs to come off will not hurt him. Oh, I had purchased Joe and Braun electric razor at COSTCO last week when we found out that he would not be able use a sharp edge razor. He loves it and it really shaves him good. It also made it easier to shaved the hair off his arm.
Friday morning Joe had more visits to MDACC which one was to have the weekly change of the PICCs and dressing at the Infusion department. I watched carefully how they do it since I am still not 100% confident to be certified to do it myself since it is very detailed and it is done sterile. It is quite a detailed event. Joe had several other things done and then our afternoon was free. We had the best lunch at the Brown Bag Deli with tender medium rare roast beef on a soft wheat roll. It is located across from Le Madeline where we had lunch the other day. It is located on Kirby Street halfway between the hotel and MDACC. It is also an area of great shops including Chicos.
Friday night we had take out dinner from Maggianos with fried calamari, meat lasagna and tiramasu. TBS has been blocked out in broadcasting the Yankee/Ranger game because of their stupid dispute. We attempted to buy the $9.95 broadcast on mlb.com but had huge difficulty loading it. Joe ate the dinner while I had their tech support on the phone for an hour to no avail, The bandwidth at the hotel is not wide enough so I requested our money back. We shall see if we get it or I will dispute the charge since I have a trouble ticket number. The food was cold by the time I got to it. Microwaved heated up calamari is not the same. The lasagna was Ok but the best part was the tiramasu. Joe and I kept up with the game via ESPN on what was going on each inning. It was the best we could do. The Rangers won and I was happy for them but at least the Giant/Philly game the next night was on FOX so we would be able to see it. Right!
Saturday morning we rose early since Joe was to get the other half of the chemo "V" as an out patient. The staff was great and treated everyone like a VIP. Joe laid on the bed and I sat in the easy chair. They gave him some anti nausea and other stuff for the first 30 minutes then she turned on the "V" drip. Both of us fell asleep and snored as if we were a chorus. What a sight to see and hear! Joe felt woozy but still was pretty good. The nurse told him the most common side effect was constipation and to take a stool softener with laxative to prevent that. I had some at the hotel but gave him only one pill. Joe said THANK GOODNESS for giving him only one. It works!
Afterwards we went to Goode's BBQ on Kirby that was always jammed packed with cars. The music was blaring real twangy country music outside an inside. The place had great atmosphere and pretty good BBQ but nothing like Smokin Gold BBQ in Dahlonega. I am sure we will come back to this place to try their ribs and brisket. They had sold out of their ribs by the time we got there.
Saturday night Joe wanted to eat out and not bring food in. I had read an article in one of the Houston magazines like Creative Loafing of a place located in the Heights area of Houston called Zelko's Cafe and Joe was craving a good hamburger. The article had raved about the BOSS Burger which was a chargilled medium rare half burger with crisp bacon, melted cheddar, carmelized onions on a great roll with parmesan garlic fries. The place has fab vibes with a lovely bar, great warm wooden walls with close tables with friendly waiters and customers. The Heights area reminds me of Virginia Highlands before it became the "in" place to go to. Great Meal, Great Service, Great Vibes, Great Section of Town, with a Great friendly crowd. We followed the baseball game on the iPhone of the Giants/Phillies. Most were rooting for the Phillies but I was rooting for the Giants. We got to the hotel to watch the last two innings. Lo and Behold with the top of the ninth, the score 3-2, two outs for the Phillies, with two men on base and Ryan Howard up to bat. The Satellite TV went down. I could not believe the timing which was absolutely the worse. 10 minutes later the Giants had already won and had chased off the field for their celebration. Oh well! I told the front desk that their satellite system SUCKED! The guy laughed at me!
On Sunday we attended St Philips Presbyterian Church around the corner from us. It is a bright clean lines church. The organ and choir is in the back of the church up in the balcony. Both Joe and I prefer to have it the way our church has it with the choir and music up front. The preacher is Bernard Nord with beautiful head of white hair with a great speaking voice and charisma. We were greeted at the door by several greeters and we told them who we were and where we came from. They gave us a goody bag as a welcome gift. Sweet. We sat in the next to last pew since I still had my nasty hacking cough and if I started to have a spasm I could leave quickly. After the passing of the Peace and the preacher introduced us to the rest of the members which was sweet and funny. The preacher has a son who lives in Monroe, Ga. The couple sitting behind us was visiting the church for the first time since their Presbyterian Church was closing and merging with St Philips. Membership issues seem to be an issue in Houston also. The service was very similar to our church with no surprises. They also were having a membership meeting after the service to elect the next slate of officers. Like our church, I enjoyed the children's sermon at the altar's steps. The kids seemed to love the attention.
Sunday was a take it easy day with Joe and I watching football games and reading the Sunday Paper. Joe spit cleaned our car as I took a nap for several hours. For dinner we went to OUTBACK STEAKS which Joe enjoys so much. He had the ribeye steak Pittsburgh style and I had the small fillet the same way. I thought my fillet was a bit grainy and declined the offer from the manager to exchange it but I thought I was being overly fussy. It turned out that half of my fillet was inedible. I must have gotten the end of the fillet cut but I did enjoy my glass of Pinot Grigio and my Caesar Salad which Joe was not allowed to have. I missed seeing Desperate Housewives but I did get to see the wonderful Brothers and Sisters. I do not like Central Standard Time (CST) since I miss so many of the prime TV shows since they come on an hour earlier here. I am out of my rhythm. I was able to to catch up on part of my blog which was painful to write. We headed to bed at midnight. Again I had a tough night with the dry itching cough every few minutes.
I will start a new blog entry of today's events since there were some important health updates on Joe.
Ciao!
Where have you been, Bonnie? One week later
To say the past week was intense, stressful, sick, busy, exhausting is not really descriptive enough. I have not written because I lacked the energy and the emotional stamina to relive each day. I made it through the last week from your prayers and the grace of the power of God. Yes, there were times I really thought I had reached the end of my mind that someone else would have to take over. God lifted me up when I was at the lowest of spirit. Joe needed me and I had nothing left in my body at the end of each day. Let me see how much I can remember.
Since I had another rough night with the sore throat on Sunday night (10/17), I had surfed the web trying to find a clinic that would open early since Rick Dangar (Joe's brother-in-law) and I intended to leave for Houston at 9AM. I found the Take Care Clinic located in Walgreens on Five Forks Trickum in Lawrenceville that opened at 8AM. I wanted to get there early so I could be the first patient to be seen. I told Rick I was heading to the Clinic and to take his time getting ready. All the bags and incidentals were packed and ready to be put into the car. He could bring them to the garage so when I got back we could get up and go.
Thankfully my game plan was good in being the first patient and the nurse practitioner did the exam and swabs. Shockingly it was not strep. With the horrible sore throat that made my ears hurt was not strep so it was just a stupid miserable cold. I was dreading the future aspects after having a sore throat that the congestion and cough would soon follow. Unfortunately I was correct. The nurse prescribed a antihistamine and to take benedryl mixed with Mylanta and gargle and swallow. It would coat the throat way down. I was willing to try anything since nothing worked thus far. On my way home I decided to gas up at Kroger just as Joe called me about how to handle paying for the hotel room for him and his brother, Drew. He distracted me from the thousand things running through my mind and I could not believe that he needed me to figure out what to do.
Upon gassing up I headed to the house where Rick had neatly gathered all the stuff to be packed into the car. I took the meds then made sure all the light timers and radios were set as well as unplug the TV, take the garbage to the street, ice the drinks, lock all the doors. By the time I did all that Rick had packed the car expertly! We were ready to head to Ms. Kim's Bagels and More Shop to have bagels and cream cheese. It was at that time I realized my iPhone was missing. Perhaps I left it at the house with my last minute running around. Perhaps I left it on the Kroger gas pump when Joe called and distracted me. Since we were across the street from Kroger, we stopped there first, checked the pump (no), asked the gas pump gal (no), gas pump gal called inside the store (no). Of course we called my phone several times and we heard NOTHING! Of course, it must be at home. So we headed back to the house, where all the doors were locked. I had given my keys to Joe's sister and our neighbor who was at work! The garage door was opened by the electronic door opener but the door to the house was locked and we had no key. By the blessings of God, Rick wiggled the door knob like crazy and somehow it opened. We were IN! I ran all around downstairs and ran upstairs looking in all the normal places. Rick calls my phone. I call my phone from upstairs.
Rick received a call from a man inside Kroger who was having coffee at the Starbucks concession. He told Rick that he had my phone but it was looked badly damaged. He found it on the ground at the Kroger gas pump and it had been run over. Probably by me! Surely by me! I must have put the phone on top of the car and drove off. So back to Kroger we go. Rick dropped me off at the front door and I walked in and the poor man handed me my smashed iPhone. The screen looked like a smashed windshield where someone had thrown a brick at it and it had a zillion cracks. By the time he handed to me, I was crying and he said he was so sorry. My phone was my lifeline to Joe and to everyone. I bawled and I bawled my eyes out. I told Rick that we had to head home where I could get the Apple iPhone Care policy so I could get a new free replacement phone. I found the policy and called Apple was we drove to AT&T store at Northlake where I had purchased the phone. As Rick drove, I spoke to Apple after being disconnected twice. The third time was NOT the charm since Apple said the policy did not cover accidental damage and that I would have to pay $199 for a new phone. I was misled by the AT&T salesperson when I bought the phone. The Apple gal advised me to head to the AT&T store and confront them. Well, that did not work since they told me that I would have to go to the APPLE store either at LENOX or Perimeter.
I was grateful to see that there were not many cars parked at Lenox Mall and that I should be able to get a new phone quickly. The APPLE Store is on the second floor of the very large Lenox Mall. Every other store was empty begging for people. Well, they were all at the APPLE Store. It was jammed packed with people. Oh no! An Apple agent with an iPad comes up to me and asked me what I wanted and if I had an appointment. I just about died right then and there. I told him that I was desperate and that I had to have a phone since I on my my way to Houston to be with my very sick husband...yada, yada, yada. He said he had an appointment open for Noon only 10 minutes away. I waited and waited and waited. At 12:15 PM I asked the iPad guy where was my name on the queue and he said it was no way to tell that and I would be seen in the order as I was logged in and to the appropriate person. I waited and waited and waited and paced the floor back and forth and in circles. I asked again since a person who came after me was already seen and gone. My name in the queue somehow got mistakingly marked as "seen". More tears. Good grief. The iPad guy got his manager who went into the back office and got someone to take care of me finally at 12:45PM. She says to me that since I had waited so long in error that they would sell me the phone at a discounted price of $199 rather than the normal price of $499. Lesson learned: DO NOT BUY ANY APPLE CARE POLICY, it is worthless and only to their benefit. At 1PM, I had a new phone and somehow the gal was able to log in all my contacts, another blessing! All my applications were lost but at least I had a phone. As I was ready to head to the escalator, there was poor Rick who had just came up to see if I needed to be rescued. So finally at 1:15pm we were finally on Interstate 85 South heading to Biloxi only 4 hours and 15 minutes late.
I was physically and emotionally exhausted after being sick all night and the turmoil of the smashed iPhone. Rick drove the whole way to Biloxi to the La Quinta Inn which was clean and comfortable with nice personnel. We ate dinner at the nearby Applebee's and had the sweetest waitress. I had soup and a appetizer of plain chicken nuggets since my stomach had been churning and aching all the way to Biloxi. I attributed it to the high stress of the day. We hit the comfortable beds at 11PM. About 1 AM I woke up to a bomb blast uncontrollably coming out of my rear end. What a freaking mess and stinky. I was so worried about waking about Rick. I headed to back to bed and did not make it again. Another bomb blast and another! My stomach hurt worse! I decide to take my pillow and put the towels on the bathroom floor and try to sleep there. Good idea! Alas, that did not work either with several more bomb blasts. The bath room looked like a war zone. Somehow I had to get some meds FAST. About 4:00 AM, I suppose there was nothing left inside me so I got dressed and drove over to the convenience store across the way to get some IMODIUM super strength to stop the bomb blast medicine. God was with me since somehow I made it over there without bombing my car or the convenience store. I immediately down 2 pills. I made it back to the room when I was gifted another bomb but this time the toilet stopped up! OH NO! This can not be happening. I took another pill and headed to the front desk for a plunger. I pushed up and down and up and down and the dang thing would not get unstopped. I was weak and dehydrated and needed liquids quick. Reluctantly I woke up Rick and embarrassingly told him my dilemma. He got it undone. Praise God and somehow Rick did not puke from the smell and the war zone. He headed back to bed and I laid on the floor till I was sure the bombs had stopped. I was back in the bed about 6:30AM and slept till 9AM. Rick already had breakfast and I took a wonderful long shower. I guess we got back on the road at 10AM or thereabouts. MAX was a perfect dog in the back seat of the car as well as in the room.
Thank goodness Rick drove from Biloxi to Houston (7 hours) through bayou country with long bridges over the bayou. My stomach was still churning and a mess. I was able to get some sleep. I was also successful in getting CAREMARK to let Joe get the Neupogin injections and let me do them rather than having to go to the hospital everyday. It took about 2 hours to get that solved but I was so happy with that success.
Our first stop in Houston was to check into the Homestead Studio Suites at the Galleria area. I was not able to see the rooms the week before and went by the photos. The room was too square with 1 chair, king sized bed, and a kitchenette along one wall. I knew that this room would not work for 32 days that we needed to get a better room. But there were no other rooms available till the next day. They showed us a smoking room but it seemed more like a small apartment with a couch, separate kitchen, vanity area separate from the toilet and tub. I agreed to take the non smoking room for the next day but it meant moving stuff twice but it had to be done. We unpacked the car and headed over to the Marriott Courtyards at the Medical Center which were large and so very nice but they do not take dogs. Joe was at MDACC getting his shots and PICC lines flushed. He had forgotten to do that earlier in the day till I reminded him. We waited in the large lobby for Joe to show up and I started the hacking cough and the nasty congested nose The manager was so alarmed at my hacking he delivered me a bottle of cold water. This cough was uncontrollable with spasms where I could not breath. Joe walked in from the shuttle and he is bleeding on his arm from hitting the van's door that needed cleaning up. Josephine, Drew's wife, comes gets us to come to the room where we rested and talked some then loaded the car. All five of us loaded into my Lexus and head to dinner to Pappasito's where the iPhone map application showed the restaurant to be across the way from our hotel. Up and down we went and heck, where was the dang restaurant? I could not believe that I could miss it. I got Joe to call directory assistance and I proceeded to talk to the restaurant to find out where they were. It did not make any sense at all. I asked if this was Pappasito's and no it was not. The directory assistance person connected us to Pappadeaux!!! Good Grief!! I got on my iphone as I pulled off to the side of the road and talked to the real Pappasito's. Well, they said my map application on my phone was wrong and that they were located about another 15 minutes away. I got the directions and found the dang place which was no where near where the map stated. BEWARE! We all had upscale Tex-Mex food which is way different that the Atlanta Mexican fare but everyone seemed to enjoy their food. Joe ordered a glass of wine and I said Joe, you are not allowed to have alcohol. He forgot. I also had to remind him that he could not have any fresh fruit or fresh veggies. God, I felt like a mother and I did not like that at all. After dinner I wanted to unpack the car with Joe's stuff and leave Joe and Rick at the hotel to get settled in but Drew requested that I take them to their hotel first which I did. Finally back at the hotel about 11PM we were wiped out and now we had to empty the car. We did. We all headed to bed as quick as possible since Rick and I had to get up at 6AM to pick up Drew and Josephine and head to the airport which was about an hour away. I dropped all three at the curb as they headed to check in. I headed back to the hotel and crashed back into bed about 9AM blowing my nose and hacking worse than ever. I desperately needed rest but there was no time to do that since we had to get change rooms and buy things needed for our be temporary home.
I will continue the pass week events possibly tomorrow. I certainly had enough reliving the two days of events.
Ciao.
Since I had another rough night with the sore throat on Sunday night (10/17), I had surfed the web trying to find a clinic that would open early since Rick Dangar (Joe's brother-in-law) and I intended to leave for Houston at 9AM. I found the Take Care Clinic located in Walgreens on Five Forks Trickum in Lawrenceville that opened at 8AM. I wanted to get there early so I could be the first patient to be seen. I told Rick I was heading to the Clinic and to take his time getting ready. All the bags and incidentals were packed and ready to be put into the car. He could bring them to the garage so when I got back we could get up and go.
Thankfully my game plan was good in being the first patient and the nurse practitioner did the exam and swabs. Shockingly it was not strep. With the horrible sore throat that made my ears hurt was not strep so it was just a stupid miserable cold. I was dreading the future aspects after having a sore throat that the congestion and cough would soon follow. Unfortunately I was correct. The nurse prescribed a antihistamine and to take benedryl mixed with Mylanta and gargle and swallow. It would coat the throat way down. I was willing to try anything since nothing worked thus far. On my way home I decided to gas up at Kroger just as Joe called me about how to handle paying for the hotel room for him and his brother, Drew. He distracted me from the thousand things running through my mind and I could not believe that he needed me to figure out what to do.
Upon gassing up I headed to the house where Rick had neatly gathered all the stuff to be packed into the car. I took the meds then made sure all the light timers and radios were set as well as unplug the TV, take the garbage to the street, ice the drinks, lock all the doors. By the time I did all that Rick had packed the car expertly! We were ready to head to Ms. Kim's Bagels and More Shop to have bagels and cream cheese. It was at that time I realized my iPhone was missing. Perhaps I left it at the house with my last minute running around. Perhaps I left it on the Kroger gas pump when Joe called and distracted me. Since we were across the street from Kroger, we stopped there first, checked the pump (no), asked the gas pump gal (no), gas pump gal called inside the store (no). Of course we called my phone several times and we heard NOTHING! Of course, it must be at home. So we headed back to the house, where all the doors were locked. I had given my keys to Joe's sister and our neighbor who was at work! The garage door was opened by the electronic door opener but the door to the house was locked and we had no key. By the blessings of God, Rick wiggled the door knob like crazy and somehow it opened. We were IN! I ran all around downstairs and ran upstairs looking in all the normal places. Rick calls my phone. I call my phone from upstairs.
Rick received a call from a man inside Kroger who was having coffee at the Starbucks concession. He told Rick that he had my phone but it was looked badly damaged. He found it on the ground at the Kroger gas pump and it had been run over. Probably by me! Surely by me! I must have put the phone on top of the car and drove off. So back to Kroger we go. Rick dropped me off at the front door and I walked in and the poor man handed me my smashed iPhone. The screen looked like a smashed windshield where someone had thrown a brick at it and it had a zillion cracks. By the time he handed to me, I was crying and he said he was so sorry. My phone was my lifeline to Joe and to everyone. I bawled and I bawled my eyes out. I told Rick that we had to head home where I could get the Apple iPhone Care policy so I could get a new free replacement phone. I found the policy and called Apple was we drove to AT&T store at Northlake where I had purchased the phone. As Rick drove, I spoke to Apple after being disconnected twice. The third time was NOT the charm since Apple said the policy did not cover accidental damage and that I would have to pay $199 for a new phone. I was misled by the AT&T salesperson when I bought the phone. The Apple gal advised me to head to the AT&T store and confront them. Well, that did not work since they told me that I would have to go to the APPLE store either at LENOX or Perimeter.
I was grateful to see that there were not many cars parked at Lenox Mall and that I should be able to get a new phone quickly. The APPLE Store is on the second floor of the very large Lenox Mall. Every other store was empty begging for people. Well, they were all at the APPLE Store. It was jammed packed with people. Oh no! An Apple agent with an iPad comes up to me and asked me what I wanted and if I had an appointment. I just about died right then and there. I told him that I was desperate and that I had to have a phone since I on my my way to Houston to be with my very sick husband...yada, yada, yada. He said he had an appointment open for Noon only 10 minutes away. I waited and waited and waited. At 12:15 PM I asked the iPad guy where was my name on the queue and he said it was no way to tell that and I would be seen in the order as I was logged in and to the appropriate person. I waited and waited and waited and paced the floor back and forth and in circles. I asked again since a person who came after me was already seen and gone. My name in the queue somehow got mistakingly marked as "seen". More tears. Good grief. The iPad guy got his manager who went into the back office and got someone to take care of me finally at 12:45PM. She says to me that since I had waited so long in error that they would sell me the phone at a discounted price of $199 rather than the normal price of $499. Lesson learned: DO NOT BUY ANY APPLE CARE POLICY, it is worthless and only to their benefit. At 1PM, I had a new phone and somehow the gal was able to log in all my contacts, another blessing! All my applications were lost but at least I had a phone. As I was ready to head to the escalator, there was poor Rick who had just came up to see if I needed to be rescued. So finally at 1:15pm we were finally on Interstate 85 South heading to Biloxi only 4 hours and 15 minutes late.
I was physically and emotionally exhausted after being sick all night and the turmoil of the smashed iPhone. Rick drove the whole way to Biloxi to the La Quinta Inn which was clean and comfortable with nice personnel. We ate dinner at the nearby Applebee's and had the sweetest waitress. I had soup and a appetizer of plain chicken nuggets since my stomach had been churning and aching all the way to Biloxi. I attributed it to the high stress of the day. We hit the comfortable beds at 11PM. About 1 AM I woke up to a bomb blast uncontrollably coming out of my rear end. What a freaking mess and stinky. I was so worried about waking about Rick. I headed to back to bed and did not make it again. Another bomb blast and another! My stomach hurt worse! I decide to take my pillow and put the towels on the bathroom floor and try to sleep there. Good idea! Alas, that did not work either with several more bomb blasts. The bath room looked like a war zone. Somehow I had to get some meds FAST. About 4:00 AM, I suppose there was nothing left inside me so I got dressed and drove over to the convenience store across the way to get some IMODIUM super strength to stop the bomb blast medicine. God was with me since somehow I made it over there without bombing my car or the convenience store. I immediately down 2 pills. I made it back to the room when I was gifted another bomb but this time the toilet stopped up! OH NO! This can not be happening. I took another pill and headed to the front desk for a plunger. I pushed up and down and up and down and the dang thing would not get unstopped. I was weak and dehydrated and needed liquids quick. Reluctantly I woke up Rick and embarrassingly told him my dilemma. He got it undone. Praise God and somehow Rick did not puke from the smell and the war zone. He headed back to bed and I laid on the floor till I was sure the bombs had stopped. I was back in the bed about 6:30AM and slept till 9AM. Rick already had breakfast and I took a wonderful long shower. I guess we got back on the road at 10AM or thereabouts. MAX was a perfect dog in the back seat of the car as well as in the room.
Thank goodness Rick drove from Biloxi to Houston (7 hours) through bayou country with long bridges over the bayou. My stomach was still churning and a mess. I was able to get some sleep. I was also successful in getting CAREMARK to let Joe get the Neupogin injections and let me do them rather than having to go to the hospital everyday. It took about 2 hours to get that solved but I was so happy with that success.
Our first stop in Houston was to check into the Homestead Studio Suites at the Galleria area. I was not able to see the rooms the week before and went by the photos. The room was too square with 1 chair, king sized bed, and a kitchenette along one wall. I knew that this room would not work for 32 days that we needed to get a better room. But there were no other rooms available till the next day. They showed us a smoking room but it seemed more like a small apartment with a couch, separate kitchen, vanity area separate from the toilet and tub. I agreed to take the non smoking room for the next day but it meant moving stuff twice but it had to be done. We unpacked the car and headed over to the Marriott Courtyards at the Medical Center which were large and so very nice but they do not take dogs. Joe was at MDACC getting his shots and PICC lines flushed. He had forgotten to do that earlier in the day till I reminded him. We waited in the large lobby for Joe to show up and I started the hacking cough and the nasty congested nose The manager was so alarmed at my hacking he delivered me a bottle of cold water. This cough was uncontrollable with spasms where I could not breath. Joe walked in from the shuttle and he is bleeding on his arm from hitting the van's door that needed cleaning up. Josephine, Drew's wife, comes gets us to come to the room where we rested and talked some then loaded the car. All five of us loaded into my Lexus and head to dinner to Pappasito's where the iPhone map application showed the restaurant to be across the way from our hotel. Up and down we went and heck, where was the dang restaurant? I could not believe that I could miss it. I got Joe to call directory assistance and I proceeded to talk to the restaurant to find out where they were. It did not make any sense at all. I asked if this was Pappasito's and no it was not. The directory assistance person connected us to Pappadeaux!!! Good Grief!! I got on my iphone as I pulled off to the side of the road and talked to the real Pappasito's. Well, they said my map application on my phone was wrong and that they were located about another 15 minutes away. I got the directions and found the dang place which was no where near where the map stated. BEWARE! We all had upscale Tex-Mex food which is way different that the Atlanta Mexican fare but everyone seemed to enjoy their food. Joe ordered a glass of wine and I said Joe, you are not allowed to have alcohol. He forgot. I also had to remind him that he could not have any fresh fruit or fresh veggies. God, I felt like a mother and I did not like that at all. After dinner I wanted to unpack the car with Joe's stuff and leave Joe and Rick at the hotel to get settled in but Drew requested that I take them to their hotel first which I did. Finally back at the hotel about 11PM we were wiped out and now we had to empty the car. We did. We all headed to bed as quick as possible since Rick and I had to get up at 6AM to pick up Drew and Josephine and head to the airport which was about an hour away. I dropped all three at the curb as they headed to check in. I headed back to the hotel and crashed back into bed about 9AM blowing my nose and hacking worse than ever. I desperately needed rest but there was no time to do that since we had to get change rooms and buy things needed for our be temporary home.
I will continue the pass week events possibly tomorrow. I certainly had enough reliving the two days of events.
Ciao.
Sunday, October 17, 2010
Good News and Other stuff
Joe was released as an inpatient from MD Anderson Cancer Center (MDACC) around 1pm on Saturday. He is temporarily staying in an adjourning room next to his brother, Drew and Josephine, at the Marriott Courtyard on S Main St until I get back to Houston. Drew and Josephine arrived from Columbia, SC just as I was leaving to come back to Atlanta to get our affairs in order, get clothes, car and Max. I intended to start to drive back to Houston on Sunday with Rick, Joe's brother-in-law but I had to postponed it to Monday because of a nasty cold and exhaustion.
Joe's hemoglobin improved to 9.2, his white blood count went down to 83 (from 137), and his oxygen levels improved to 96% from 84 %. Thanks to Joe being given oxygen. Joe can not breathe deeply because of his massive spleen pushing on his diaphragm. His spirits are wonderful thanks to the phone calls and his brother being there. The Houston area Presbytery came to visit him Friday.
In spite of all the hand washing and alcohol wipes I caught the cold at the hospital and had to wear a mask around Joe. If I have glasses on, they fog up.
On Friday AM, I took a shower at the Westin and headed to the airport, returned the car, and made it to the gate just as they were boarding the plane. The flight was smooth and uneventful. With no bags, I was able to go straight to my car. My first stop was Camp Woof to pick up MAX. Boy, he was one excited dog when he came out of the free range kennel.
Once home, I started to do the 1001 items to get done. I did not realize how much there was to do and still to do. Saturday was one of those days where nothing went right and it finally came to a point where I broke down over stupid idiotic stuff. The thing that broke the camel's back was getting my nails filled in and waxing my eyebrows and upper lip. The technician was going too fast and was a bit rough. When she did my upper lift, I swore she tore off some skin but it was very sensitive from the excessive blowing of my little nose. I yelled at the tech, Geez girl, you are rough and you took some skin off! She brushed me off a bit and keep pushing and tugging, then the tears started and I could not stop the flow. Stupid, embarrassing and over reacting from me which is from all the stress of the week plus feeling down and out lousy sick. I made it home with tears still flowing. Poor Linda R called me and the stupid tears flowed again. I made myself some chicken soup, took meds and headed to bed where I slept for a glorious 3 hours but when I woke up the sore throat was worse.
I fired off an e-mail to whoever I could at MDACC for assistance since CAREMARK, Joe's mail order company, has rejected the prescription the Dr Romaguera wrote for Neupogin injections stating that it was inappropriate. Well, what the heck do they know since Joe is the first case of Myelofibrosis and Mantle Cell Lymphoma. The Neupogin is suppose to help grow healthy white blood cells rather than in immature worthless ones. From my years of participating on line support groups that one has to challenge it and provide supporting documentation from the doctor why it is needed.
I treated myself to Outback with grilled chicken and mashed potatoes. I hardly ever order mashed potatoes but they were great on my raw red throat. Sunday AM , I will visit one of the Minute Clinics to make sure that it is not strep and got more potent drugs.
Rick and I intend to drive to Houston starting on Monday and arrive on Tuesday. Hopefully I will be more rested and feeling better.
Thanks for the e-mails, facebook postings as well as comments on the blog site. I love them.
Good night. Off to bed and sleep till I wake up with no alarm clock waking me.
God bless!
Bonnie
Joe's hemoglobin improved to 9.2, his white blood count went down to 83 (from 137), and his oxygen levels improved to 96% from 84 %. Thanks to Joe being given oxygen. Joe can not breathe deeply because of his massive spleen pushing on his diaphragm. His spirits are wonderful thanks to the phone calls and his brother being there. The Houston area Presbytery came to visit him Friday.
In spite of all the hand washing and alcohol wipes I caught the cold at the hospital and had to wear a mask around Joe. If I have glasses on, they fog up.
On Friday AM, I took a shower at the Westin and headed to the airport, returned the car, and made it to the gate just as they were boarding the plane. The flight was smooth and uneventful. With no bags, I was able to go straight to my car. My first stop was Camp Woof to pick up MAX. Boy, he was one excited dog when he came out of the free range kennel.
Once home, I started to do the 1001 items to get done. I did not realize how much there was to do and still to do. Saturday was one of those days where nothing went right and it finally came to a point where I broke down over stupid idiotic stuff. The thing that broke the camel's back was getting my nails filled in and waxing my eyebrows and upper lip. The technician was going too fast and was a bit rough. When she did my upper lift, I swore she tore off some skin but it was very sensitive from the excessive blowing of my little nose. I yelled at the tech, Geez girl, you are rough and you took some skin off! She brushed me off a bit and keep pushing and tugging, then the tears started and I could not stop the flow. Stupid, embarrassing and over reacting from me which is from all the stress of the week plus feeling down and out lousy sick. I made it home with tears still flowing. Poor Linda R called me and the stupid tears flowed again. I made myself some chicken soup, took meds and headed to bed where I slept for a glorious 3 hours but when I woke up the sore throat was worse.
I fired off an e-mail to whoever I could at MDACC for assistance since CAREMARK, Joe's mail order company, has rejected the prescription the Dr Romaguera wrote for Neupogin injections stating that it was inappropriate. Well, what the heck do they know since Joe is the first case of Myelofibrosis and Mantle Cell Lymphoma. The Neupogin is suppose to help grow healthy white blood cells rather than in immature worthless ones. From my years of participating on line support groups that one has to challenge it and provide supporting documentation from the doctor why it is needed.
I treated myself to Outback with grilled chicken and mashed potatoes. I hardly ever order mashed potatoes but they were great on my raw red throat. Sunday AM , I will visit one of the Minute Clinics to make sure that it is not strep and got more potent drugs.
Rick and I intend to drive to Houston starting on Monday and arrive on Tuesday. Hopefully I will be more rested and feeling better.
Thanks for the e-mails, facebook postings as well as comments on the blog site. I love them.
Good night. Off to bed and sleep till I wake up with no alarm clock waking me.
God bless!
Bonnie
Friday, October 15, 2010
BUSY DAY
I am too tired to write my normal detailed blog but here are some highlights and low lights.
1. Joe did not sleep last night cause his spleen/stomach bloated up making him look 8.5 months pregnant. Uncomfortable but no pain Joe stated.
2, Joe had a PET SCAN. The scan showed his enlarged spleen and liver. The spleen looks like a 8 pound baby. (Maybe, Joe is pregnant?) HA!
3. I attended two classes on how to change the plugs on the PICC and flush the line which is done each day. Changing the dressing is super detailed and complicated so as long as we are here, we will let them do it in the hospital. In spite of my anxiety about it, they will come up and certify me at 8:30 AM in the morning with a live change on Joe. I feel like it is a Regents Exam. Room phone number is 713.834.8945.
4. Whitney Wilkerson called me and offered her assistance. Whitney interned in our church while she was attending Columbia Seminary. She lives and ministers in Victoria about 2 hours from here but she gets to Houston every so often so I know that we will see her soon!
5. The phone calls from family and friends really uplifted Joe's spirits. The jokes were great!
6. My deacon, Patty Swift, called me and offered assistance and food. I definitely do not need food. She said the church was looking for someone to drive with me to Houston.
7. BLESSINGS! Rick, Joe's brother in law, has volunteered to drive with me to Houston from Atlanta. FAMILY is the BEST! Joe's brother, Drew, arrives with his wife, Josephine early Friday morning with my "ADOPTED" Chinese graduate student, Yan, picking them up at the airport!!! Yan also stopped by for a short visit tonight. Joe and I love her. She is one very special person who is permanently etched into our hearts. Our wonderful next door neighbors offered to assist me with the drive back to Houston just 30 minutes after Rick volunteered. I love the Bennets!
8. PET SCAN showed cancer in the lymph nodes on the left side of Joe's neck and into his upper chest, as well as a spot on the enlarged liver. CHEMO is suppose to attack those. ATTACK THEM, DESTROY those SUCKERS!
9. Joe is now receiving some oxygen since his levels went down to 85% because he can not breathe deep because of the massive spleen. Since the oxygen started late this afternoon, the levels went to 96%. GOOD! They also gave Joe more potassium and magnesium since those levels were low.
10. New room has a MURPHY BED so I get to sleep in style. Now tell me why I also have a 4 star hotel room that I am not using????? Joe needs and wants me near him!
11. The second bag of CYCOLPS for the day starts at 11;30PM.
12, Joe was given Lasix to get fluid out of his body. More coming in than going out. He peed so much that he moved a chair and the Chemo Tree next to the bathroom door.
13. He did not eat tonight cause he got filled from a frappacino treat earlier. NO more treats like that till he eats his meals. Yes, Mommy! LOL.
14. Good night. I have caught a cold in spite of all the hand washing, and antiseptic wipes. Now, I have to wear a mask which suffocates me and steams up my glasses.
That is it folks!
Ciao,
Bonnie
1. Joe did not sleep last night cause his spleen/stomach bloated up making him look 8.5 months pregnant. Uncomfortable but no pain Joe stated.
2, Joe had a PET SCAN. The scan showed his enlarged spleen and liver. The spleen looks like a 8 pound baby. (Maybe, Joe is pregnant?) HA!
3. I attended two classes on how to change the plugs on the PICC and flush the line which is done each day. Changing the dressing is super detailed and complicated so as long as we are here, we will let them do it in the hospital. In spite of my anxiety about it, they will come up and certify me at 8:30 AM in the morning with a live change on Joe. I feel like it is a Regents Exam. Room phone number is 713.834.8945.
4. Whitney Wilkerson called me and offered her assistance. Whitney interned in our church while she was attending Columbia Seminary. She lives and ministers in Victoria about 2 hours from here but she gets to Houston every so often so I know that we will see her soon!
5. The phone calls from family and friends really uplifted Joe's spirits. The jokes were great!
6. My deacon, Patty Swift, called me and offered assistance and food. I definitely do not need food. She said the church was looking for someone to drive with me to Houston.
7. BLESSINGS! Rick, Joe's brother in law, has volunteered to drive with me to Houston from Atlanta. FAMILY is the BEST! Joe's brother, Drew, arrives with his wife, Josephine early Friday morning with my "ADOPTED" Chinese graduate student, Yan, picking them up at the airport!!! Yan also stopped by for a short visit tonight. Joe and I love her. She is one very special person who is permanently etched into our hearts. Our wonderful next door neighbors offered to assist me with the drive back to Houston just 30 minutes after Rick volunteered. I love the Bennets!
8. PET SCAN showed cancer in the lymph nodes on the left side of Joe's neck and into his upper chest, as well as a spot on the enlarged liver. CHEMO is suppose to attack those. ATTACK THEM, DESTROY those SUCKERS!
9. Joe is now receiving some oxygen since his levels went down to 85% because he can not breathe deep because of the massive spleen. Since the oxygen started late this afternoon, the levels went to 96%. GOOD! They also gave Joe more potassium and magnesium since those levels were low.
10. New room has a MURPHY BED so I get to sleep in style. Now tell me why I also have a 4 star hotel room that I am not using????? Joe needs and wants me near him!
11. The second bag of CYCOLPS for the day starts at 11;30PM.
12, Joe was given Lasix to get fluid out of his body. More coming in than going out. He peed so much that he moved a chair and the Chemo Tree next to the bathroom door.
13. He did not eat tonight cause he got filled from a frappacino treat earlier. NO more treats like that till he eats his meals. Yes, Mommy! LOL.
14. Good night. I have caught a cold in spite of all the hand washing, and antiseptic wipes. Now, I have to wear a mask which suffocates me and steams up my glasses.
That is it folks!
Ciao,
Bonnie
Wednesday, October 13, 2010
Smooth Day
Joe finished his transfusion of 2 pints of red blood cells about 7AM this morning. Very little sleep was granted last night with a steady infusion of medical personnel. The hospital keeps the rooms FRIGID and it is worse at night since there are fewer people around this massive complex. Joe was comfortable and that was more important.
For the first two hours they gave Joe Mesna which is used to protect the kidneys. It was followed by the real round of chemo called Cyclophosphamide which took about four hours. Thanks to your avid prayers he had no side effects and handled it as well as one could ever expect. Joe's red blood count is still low at 7.4 so another two pints of red blood cells has been ordered. He was also given magnesium since his levels were low via pill form which tasted like metal. Before they give him more blood they inject Benadryl and give him Tylenol.
Joe gave me the OK to go back to the hotel and take my time coming back. On the way out of the hospital I stopped by the chapel to pray and ask God to also help me cope with the stress. The hotel is about a 15 minute drive and when I got to the room I took a wonderful long hot relaxing shower and wash my hair. Joe can not use a razor to shave so I did research on the net on the best razor that would fit his needs. I packed my suitcase since I had to change rooms but that was easy since I had not packed very much since I thought that we would only be here till Friday. WESTIN delivered the new room keys to my room and I was only two floors down. All I did was place my suitcase in the room and left to go shopping for personal needs.
I found a COSTCO half way between our hotel and the hospital so I bought the Braun electric razor and a heated throw blanket to keep me warm in the hospital. My next stop was TARGET located not far from the hospital on S Main where I bought myself a two piece cheap fleece pants and hoodie to assist me in keeping warm along with toothpaste and Purcell. MISSION ACCOMPLISHED.
I was gone a total of four hours and Joe missed me. He says the time drags when I am not around. He was pleased with the razor. I told him that if he was a good boy that I would shave him. Boy, what a smile that put on his face! The small joys of life we find in dire circumstances. He devoured his lunch of pot roast which was good to see.
He can not eat or drink anything after midnight since he will have a PET scan at 7:30 AM to see where the cancer is in his body particularly the lymph nodes since that is where it normally hits people with Mantle Cell Lymphoma but Joe does not have swollen lymph nodes.
Putting smiles and comfort are the calls from all our family members. Joe is in good humor and a great frame of mind (Blessings again). My sister, Dolores, had him laughing hysterically at Doctor jokes. She said that will be her gift to him each day to tell him jokes. He will love that. It pleases me so much to hear his laughter. It is good for the soul and enhances the healing. The e-mails and postings are touching. Some words really boosted my spirits with such words from the heart.
I was suppose to be on an on line support chat for Cancer but the link was not working but I am sure that was meant for a reason. Marina, one of the MPD Atlanta members, mom lives about 50 miles from the hospital and graciously offered to have Joe and I stay with her but we need to stay near the hospital in case of infections. Perhaps after things calm down we will spend a weekend with Marina’s Mom. Marina is a fireball and I am sure her Mom is as wonderful as Marina who has a very special place in my heart.
Our pastor is also contacting other Houston Presbyterian Churches nearby to see if they can offer us any assistance and temporarily "adopt" us. Whitney Wilkerson who worked with our Eastminster Presbyterian Church with ministry a few years ago while she was a student studying at the local seminary near Decatur (Columbia Seminary) is here in this area of Texas and our Pastor contacted her to give us assistance. See how God works. He places people in our paths that are there only momentarily then again years later those people pop back up and become an important link in our lives.
WHOOPS! They popped in again and they are giving Joe a second round of the Cyclophosphamide for the day. The nurse says they give it at 9AM then again at 9PM which is a surprise so here we go………I had not idea that they could give blood and give the chemo at the same time. Yes, of course, I questioned it. They stated that they will be here checking vitals every hour all day long. YAWN!!!!!!
Oh, I am very tired. You are all gifts of God to Joe and me. May your days be blessed and fruitful. May Joe be blessed with smooth chemicals flowing through his veins and have them destroy the bad outlaw cells they are suppose to do.
Good night,
Bonnie
For the first two hours they gave Joe Mesna which is used to protect the kidneys. It was followed by the real round of chemo called Cyclophosphamide which took about four hours. Thanks to your avid prayers he had no side effects and handled it as well as one could ever expect. Joe's red blood count is still low at 7.4 so another two pints of red blood cells has been ordered. He was also given magnesium since his levels were low via pill form which tasted like metal. Before they give him more blood they inject Benadryl and give him Tylenol.
Joe gave me the OK to go back to the hotel and take my time coming back. On the way out of the hospital I stopped by the chapel to pray and ask God to also help me cope with the stress. The hotel is about a 15 minute drive and when I got to the room I took a wonderful long hot relaxing shower and wash my hair. Joe can not use a razor to shave so I did research on the net on the best razor that would fit his needs. I packed my suitcase since I had to change rooms but that was easy since I had not packed very much since I thought that we would only be here till Friday. WESTIN delivered the new room keys to my room and I was only two floors down. All I did was place my suitcase in the room and left to go shopping for personal needs.
I found a COSTCO half way between our hotel and the hospital so I bought the Braun electric razor and a heated throw blanket to keep me warm in the hospital. My next stop was TARGET located not far from the hospital on S Main where I bought myself a two piece cheap fleece pants and hoodie to assist me in keeping warm along with toothpaste and Purcell. MISSION ACCOMPLISHED.
I was gone a total of four hours and Joe missed me. He says the time drags when I am not around. He was pleased with the razor. I told him that if he was a good boy that I would shave him. Boy, what a smile that put on his face! The small joys of life we find in dire circumstances. He devoured his lunch of pot roast which was good to see.
He can not eat or drink anything after midnight since he will have a PET scan at 7:30 AM to see where the cancer is in his body particularly the lymph nodes since that is where it normally hits people with Mantle Cell Lymphoma but Joe does not have swollen lymph nodes.
Putting smiles and comfort are the calls from all our family members. Joe is in good humor and a great frame of mind (Blessings again). My sister, Dolores, had him laughing hysterically at Doctor jokes. She said that will be her gift to him each day to tell him jokes. He will love that. It pleases me so much to hear his laughter. It is good for the soul and enhances the healing. The e-mails and postings are touching. Some words really boosted my spirits with such words from the heart.
I was suppose to be on an on line support chat for Cancer but the link was not working but I am sure that was meant for a reason. Marina, one of the MPD Atlanta members, mom lives about 50 miles from the hospital and graciously offered to have Joe and I stay with her but we need to stay near the hospital in case of infections. Perhaps after things calm down we will spend a weekend with Marina’s Mom. Marina is a fireball and I am sure her Mom is as wonderful as Marina who has a very special place in my heart.
Our pastor is also contacting other Houston Presbyterian Churches nearby to see if they can offer us any assistance and temporarily "adopt" us. Whitney Wilkerson who worked with our Eastminster Presbyterian Church with ministry a few years ago while she was a student studying at the local seminary near Decatur (Columbia Seminary) is here in this area of Texas and our Pastor contacted her to give us assistance. See how God works. He places people in our paths that are there only momentarily then again years later those people pop back up and become an important link in our lives.
WHOOPS! They popped in again and they are giving Joe a second round of the Cyclophosphamide for the day. The nurse says they give it at 9AM then again at 9PM which is a surprise so here we go………I had not idea that they could give blood and give the chemo at the same time. Yes, of course, I questioned it. They stated that they will be here checking vitals every hour all day long. YAWN!!!!!!
Oh, I am very tired. You are all gifts of God to Joe and me. May your days be blessed and fruitful. May Joe be blessed with smooth chemicals flowing through his veins and have them destroy the bad outlaw cells they are suppose to do.
Good night,
Bonnie
Worse than thought
Joe and I feel like we have been hit by a MACK Truck since 2PM yesterday. Upon arriving at Bush Airport, picking up our rental car, and lunch, we received a call from MDACC Leukemia Department that the Lymphoma Department would see up at 2:30 and be there at 2PM. We arrived there at 2:10PM and promptly saw Dr Romaguerra's nurse who started to speak to us what seemed like a foreign language. I stopped her and told her that she needed to be aware that this is a cold call and that we know nothing about what is going on. It did not take too long to realize that our world had changed to a massive hurricane. Dr Romaguerra spoke with us and stayed with us for hours yesterday with grim news. Joe had a very aggressive form of Mantle Cell Lymphoma and it was more complicated with Joe already having Myelofibrosis. He recommended doing the HyperCVD chemotherapy and later on adding the Rituximab down the road. He said it would had been toxic if he had started on the Rituximab as the Leukemia had set up until I had asked for a Lymphoma consultation. He said it was urgent to get the white blood count down quickly. Joe would need to have apheresis done to get rid of a bunch of his white cells. The doc was ready to admit Joe immediately but the saving grace was that Joe's white blood count was stable from 9/21. Joe really wanted to spend one night in the WESTIN and have a good meal.
Barbara Beckman was waiting in the lobby area near the fish tanks to join us and Nancy and Dan Carr for dinner at Houston's Restaurant which we had previously arranged before all this insanity happened. I met Barbara and Nancy via the on line MPD Support and they both see Dr V since they are on the INCYTE and have a MF and PV respectfully. Barbara is from the Seattle, Washington area and Nancy is from Dallas, Texas. What a great dinner and time we had before Joe and I checked into the WESTIN. It helped us get some relief from the gravity of the day. Thank you Barbara and Nancy!
The WESTIN has put us first in an handicap room which would not work. They changed our room at my request.The WESTIN beds are amazing but the night brought us both a fitful rest with some tears, holding each other and plain talk.
Our appointment with the apheresis doc was at 9AM on Tuesday. When we arrived there, the desk nurse sent us elsewhere then they sent us another place then another, When they told us, where we were suppose to be and do, it was the old plan but no one would listen to me. I was exasperated and in tears when a male nurse took us to a private exam room. He called Keating and Korbling, Finally it was straight and Korbling, the apheresis doc, came to where we were. He reviewed Joe's medical records and lab work carefully and sent up for more lab work. He personally walked us over to the Apheresis Department and from that point on we were given the red carpet treatment.
The apheresis took about 4 hours and Joe snored away. The nurse watched the machine and measurements constantly while Korbling checked on Joe every 15-20 minutes. Joe felt terrific after that was done with so many of those excessive white cells gone. He was upbeat!
Next stop was to check into the hospital and now Joe is in the chemo hospital ward on the 10th Floor. So many people coming in and out, nurses, LPN, techs, PICC, IV's that would make one dizzy. Each would explain what they would be doing and how it would be done. Massive information overload! Our lovely Chinese couple, Yan and Hang, dropped by this evening. It surprised Joe and made him so pleased. We met Yan and Hang through the AMIGO program while Yan was attending Emory University. They celebrated Thanksgiving with us last year and we have been friends ever since. Now Yan is studying for a doctorate in Public Health right here at the Texas Medical Center. They live only 5 minutes away. Blessings continue in so many ways. What a special gift from God with our adopted Chinese family!
Another amazing blessing from God and truly a gift is Joe's brother and sister in law will fly to Houston on Friday to be with Joe as I go back to Atlanta to get more clothes, settle business, get MAX and our car. I was so worried about Joe being without someone and now he has Drew. Thank you Drew and Josephine. Yan has offered to pick them up at the airport on Friday and bring them to their hotel. Another blessing! Drew's hotel is very close to the hospital and the hotel has shuttle service.
I was able to find short term housing at the Homestead Suites that have king beds and allow pets. It is about 9 short miles from the hospital and in a great location for future needs. Another friend, Chris Ellis, sent me a link to ministry housing apartments so I applied on line for that. I asked Pastor Caleb to see if he can assist since there were several Presbyterian churches locally who participated. I need to find a Presbyterian Church nearby that I can attend during our extended stay. I will work on that.
Joe is having X-Rays one right now to make sure the PICC
Thank you to my sister, Dolores, for making Joe laugh. I love to see him laugh. Thank you to our son, Michael, for calling and expressing his love to Joe and me. Thank you to all the e-mails and love being sent. WE FEEL THE POWER!
Good night our dear ones. God is directing the events.
Ciao,
Bonnie
Barbara Beckman was waiting in the lobby area near the fish tanks to join us and Nancy and Dan Carr for dinner at Houston's Restaurant which we had previously arranged before all this insanity happened. I met Barbara and Nancy via the on line MPD Support and they both see Dr V since they are on the INCYTE and have a MF and PV respectfully. Barbara is from the Seattle, Washington area and Nancy is from Dallas, Texas. What a great dinner and time we had before Joe and I checked into the WESTIN. It helped us get some relief from the gravity of the day. Thank you Barbara and Nancy!
The WESTIN has put us first in an handicap room which would not work. They changed our room at my request.The WESTIN beds are amazing but the night brought us both a fitful rest with some tears, holding each other and plain talk.
Our appointment with the apheresis doc was at 9AM on Tuesday. When we arrived there, the desk nurse sent us elsewhere then they sent us another place then another, When they told us, where we were suppose to be and do, it was the old plan but no one would listen to me. I was exasperated and in tears when a male nurse took us to a private exam room. He called Keating and Korbling, Finally it was straight and Korbling, the apheresis doc, came to where we were. He reviewed Joe's medical records and lab work carefully and sent up for more lab work. He personally walked us over to the Apheresis Department and from that point on we were given the red carpet treatment.
The apheresis took about 4 hours and Joe snored away. The nurse watched the machine and measurements constantly while Korbling checked on Joe every 15-20 minutes. Joe felt terrific after that was done with so many of those excessive white cells gone. He was upbeat!
Next stop was to check into the hospital and now Joe is in the chemo hospital ward on the 10th Floor. So many people coming in and out, nurses, LPN, techs, PICC, IV's that would make one dizzy. Each would explain what they would be doing and how it would be done. Massive information overload! Our lovely Chinese couple, Yan and Hang, dropped by this evening. It surprised Joe and made him so pleased. We met Yan and Hang through the AMIGO program while Yan was attending Emory University. They celebrated Thanksgiving with us last year and we have been friends ever since. Now Yan is studying for a doctorate in Public Health right here at the Texas Medical Center. They live only 5 minutes away. Blessings continue in so many ways. What a special gift from God with our adopted Chinese family!
Another amazing blessing from God and truly a gift is Joe's brother and sister in law will fly to Houston on Friday to be with Joe as I go back to Atlanta to get more clothes, settle business, get MAX and our car. I was so worried about Joe being without someone and now he has Drew. Thank you Drew and Josephine. Yan has offered to pick them up at the airport on Friday and bring them to their hotel. Another blessing! Drew's hotel is very close to the hospital and the hotel has shuttle service.
I was able to find short term housing at the Homestead Suites that have king beds and allow pets. It is about 9 short miles from the hospital and in a great location for future needs. Another friend, Chris Ellis, sent me a link to ministry housing apartments so I applied on line for that. I asked Pastor Caleb to see if he can assist since there were several Presbyterian churches locally who participated. I need to find a Presbyterian Church nearby that I can attend during our extended stay. I will work on that.
Joe is having X-Rays one right now to make sure the PICC
Thank you to my sister, Dolores, for making Joe laugh. I love to see him laugh. Thank you to our son, Michael, for calling and expressing his love to Joe and me. Thank you to all the e-mails and love being sent. WE FEEL THE POWER!
Good night our dear ones. God is directing the events.
Ciao,
Bonnie
Sunday, October 10, 2010
10/10/10 The Day Before the Houston Journey
I would like to believe the 10/10/10 is a sign that the future will be full of good days and news. I suppose that I am holding onto anything that seems like HOPE.
Joe and I went to our church today at Eastminster Presbyterian. I am glad Joe went since he had skipped last week and he needed a spiritual boost. He did get it from Pastor Caleb Clark's Prayers for the People and Joe felt the words were meant for him. He was grateful for them and he told that to Caleb that also. It was wonderful to hear the well wishers from our congregation after the service but even more so, Joe felt love and compassion from the hugs. Thank you everyone who hugged Joe. It was exactly what he needed.
We had lunch at Enzo's in Tucker. Joe loves the small Bambino bowl of spaghetti with tomato sauce with two pieces of toasted bread with Sweet Iced Tea to drink. I had two slices of plain cheese pizza with my usual Diet Coke in a can in my hand. Enzo's is one of those comfortable local restaurants but it does have some ambiance with a great outdoor eating area. The inside has HD Flat screen TV's on three walls. The table tops are made of granite. Good prices and tasty food makes the place a success.
By the time we got home the Atlanta Falcons football game was on. They played the Cleveland Browns in Cleveland, They looked pretty good. Joe and I were to leave for the Braves game at 3PM when at 2:55 PM he tells me that he does not have the energy to go and to find someone to go with me. Imagine trying to do that in five minutes, Not! It was Joe's second day without the INCYTE so the dreaded fatigue has caught up with him. Joe watched the games from his favorite couch in the horizontal position with his dog laying beside him on the floor.
I drove myself over to Decatur MARTA station to hop on the train to Downtown since the baseball game was sold out. They told people who did not have a parking pass to ride MARTA. Naturally as I walked down the steps to the track, the train pulls away. DRAT! It was another 22 minutes before the next train came because of budget cuts and inefficiency. I got off at the Georgia State Station to walk the mile to the stadium since the Braves Shuttle from Five Points is slow and not in a good location after getting off the train. I did not make it there in time for the first pitch but at least I got to see Tim Hudson get out of a nasty jam in the first inning. With the Braves missing five key players, it would take a miracle for the team to make it to the next round. The crowd was enthusiastic and the Braves almost pulled it out. If Billy Wagner, our closer, had not gotten hurt at the last game, I believe that we would have won. Conrad is the GOAT again with three errors which shows how badly we miss Prado. Oh, well, I still enjoyed the game and the crowd. I kept in touch with Joe via text messaging. He texted me that he still wanted to meet for dinner at Capozzis even though our friend, Tracy Minich, was not going to make it since she was late leaving Southern Alabama. I got there about 8:45 PM and Joe was already there waiting in his truck for me to arrive. We had a lovely quiet dinner with the piano player playing tunes in the background.
Tomorrow we leave for Houston. On Tuesday Joe starts the R-FCM chemotherapy for attaching his Mantle Cell Lymphoma. Good thoughts and prays are appreciated and pray for the doctors and medical staff also. Joe is very quiet and I hope that I am giving him the support he needs.
Ciao!
Bonnie
Joe and I went to our church today at Eastminster Presbyterian. I am glad Joe went since he had skipped last week and he needed a spiritual boost. He did get it from Pastor Caleb Clark's Prayers for the People and Joe felt the words were meant for him. He was grateful for them and he told that to Caleb that also. It was wonderful to hear the well wishers from our congregation after the service but even more so, Joe felt love and compassion from the hugs. Thank you everyone who hugged Joe. It was exactly what he needed.
We had lunch at Enzo's in Tucker. Joe loves the small Bambino bowl of spaghetti with tomato sauce with two pieces of toasted bread with Sweet Iced Tea to drink. I had two slices of plain cheese pizza with my usual Diet Coke in a can in my hand. Enzo's is one of those comfortable local restaurants but it does have some ambiance with a great outdoor eating area. The inside has HD Flat screen TV's on three walls. The table tops are made of granite. Good prices and tasty food makes the place a success.
By the time we got home the Atlanta Falcons football game was on. They played the Cleveland Browns in Cleveland, They looked pretty good. Joe and I were to leave for the Braves game at 3PM when at 2:55 PM he tells me that he does not have the energy to go and to find someone to go with me. Imagine trying to do that in five minutes, Not! It was Joe's second day without the INCYTE so the dreaded fatigue has caught up with him. Joe watched the games from his favorite couch in the horizontal position with his dog laying beside him on the floor.
I drove myself over to Decatur MARTA station to hop on the train to Downtown since the baseball game was sold out. They told people who did not have a parking pass to ride MARTA. Naturally as I walked down the steps to the track, the train pulls away. DRAT! It was another 22 minutes before the next train came because of budget cuts and inefficiency. I got off at the Georgia State Station to walk the mile to the stadium since the Braves Shuttle from Five Points is slow and not in a good location after getting off the train. I did not make it there in time for the first pitch but at least I got to see Tim Hudson get out of a nasty jam in the first inning. With the Braves missing five key players, it would take a miracle for the team to make it to the next round. The crowd was enthusiastic and the Braves almost pulled it out. If Billy Wagner, our closer, had not gotten hurt at the last game, I believe that we would have won. Conrad is the GOAT again with three errors which shows how badly we miss Prado. Oh, well, I still enjoyed the game and the crowd. I kept in touch with Joe via text messaging. He texted me that he still wanted to meet for dinner at Capozzis even though our friend, Tracy Minich, was not going to make it since she was late leaving Southern Alabama. I got there about 8:45 PM and Joe was already there waiting in his truck for me to arrive. We had a lovely quiet dinner with the piano player playing tunes in the background.
Tomorrow we leave for Houston. On Tuesday Joe starts the R-FCM chemotherapy for attaching his Mantle Cell Lymphoma. Good thoughts and prays are appreciated and pray for the doctors and medical staff also. Joe is very quiet and I hope that I am giving him the support he needs.
Ciao!
Bonnie
Friday and Saturday, 10/8 and 10/9 Calm before the storm
Thank you to all the people who have sent me e-mails, posted on facebook and made comments on this blog site. It helps me put things into perspective and assist in getting my emotions out of high gear to low gear.
On Thursday I fired off an e-mail to Dr. Keating and Dr. Badoux at MDACC asking more questions. Some of the questions were straight forward. One of which whether Joe to not do any treatment and just stay on INCYTE and about the stem cell transplant.
Dr. Badoux replied, "Joe will need chemotherapy prior to transplantation. We can always organize a transplant appointment for consultation and typing when he is here.
Mantle cell lymphoma is a heterogeneous disease and the prognosis is not poor for everyone! There is a good chance of response with treatment and I would not recommend doing nothing."
Dr Badoux comments gave me confidence plus along with the massive amount of reading I did, I truly believe that it is the best option at this time. I did ask him to set up a transplant consultation while we are there this coming week as well as typing done. The articles I read about the R-FCM combochemotherapy is that it is effective and that it can put the disease into remission for awhile. But, it will come back. Each time they do it after a remission period it is less effective. Joe will have four days of chemo this week then will have four days very month for up to six months. It is possible for it to have effect after three cycles. Some patients have had some serious side effects but MDACC has a proven treatment for each of them. Joe and I read some blogs about three patients adventures over a six months and later period of time. Knowing somewhat to expect is helpful.
I told Joe Thursday night at dinner at Chili's of the new diagnosis and what I had found out so far about it. I gave him the hard truth with of course some tears coming from me. Joe handled the news gallantly and brave. It is a blessing that he trusts me so much and that he knows with all his heart and mind that I will leave no stone unturned and fight for him with all my heart and mind. What a man! He is my rock on earth and gives me the courage to do whatever I think is the right thing. While we were there, the squealing in my eyes from the new hearing aids went to the painful stage. Joe could hear them from across the table with all the noise level in the bar area. It is no wonder thay I did not throw them against the wall. We sit in the bar area of Chili's since it is where we get the best service.
On Friday after my MRI, Joe and I went back to COSTCO in Dunwoody to the hearing aid department for the second day in a row. The day before I told them to remove Program 2 and put Program 1 back down to the original level. Well, they did take off Program 2 but they INCREASED the level of Program 1 that was already awful and made it TORTURE! Now, it is down to an acceptable level without the squealing. If it fails again, I will turn these in and get my money back and try a different model.
Since we were at COSTCO, I enticed Joe to buy the 55 inch HD LCD TV that was on sale for $998. The monstrous rear projection TV that is in the living room where Joe prefers to stretch out was fuzzy and we had gotten spoiled by the LCD TV in the den. With Joe recuperating from chemo and the continuing chemo for six months, I wanted him to have a great viewing experience and now he will. Now we have to find time to set it up.
Joe is now down to zero INCYTE and has tapered off of it quite well with additional tiredness but we expected that. Joe keeps saying to others that it proves the INCYTE really works at improving Quality of Life.
IN the last two weeks I have made sure that Joe and I go out to our favorite restaurants and he enjoys his favorite foods. It has been a very "rich" experience and Joe has really gotten his full. I wanted him to eat really good so his stamina would be better. Friday night we hit the Atlanta Fish Market where we had not been since 2/15/2008. The Buckhead Life Restaurant Chain has sent me a $25 off gift card for October so we took advantage of that. After cashing that in, they gave us another $25 gift card for November, They have some of our favorite nice restaurants. Joe had 1.5 pound fresh lobster and I had a lobster mixed scampi. We shared some velvety smooth creamy mashed potatoes and fresh tender green beans. Terrific meal and service. We will not stay away so long next time.
We came home to watch the Braves play the Giants. It was not fun watching the game since at the bottom of the 7th it was 4-1 and the Braves looked horrible. It was more than I could bear. We were both tired since it was late with them playing on the West Coast, so we went to bed thinking for sure, our Bravos would lose BUT......shockingly to us, we found out our Bravos won in 11 innings 5-4. They had tied it up in the 8th. So when we attend the game tomorrow (SUNDAY) at Turner Field the series will be tied. The Braves are really a miracle team with all their injuries of key players like Chipper and Prado. Joe and I will enjoy the day tomorrow. Our seats are in the upper level third base side above 3rd base in the 8th row. I will wear my big red hat which puts me as Bonnie in perfect form.
The steroids that I am taking for my right shoulder is suppose to make me stay awake but it has done the opposite. I suppose that the meds have reduced the pressure on the shoulder which has been more comfortable to sleep. I am so sound asleep and I have been sleeping late. What a huge blessing this is, since I am not laying awake thinking the worse of everything. It also has healed the sores in my mouth from the stress. Who would have thunk!
What a beautiful warm fall Saturday in Georgia to drive to Dahlonega to see Emily Bennett, our next door neighbor's daughter, compete in her first Equestrian Show as a freshman at North Georgia College. On the way there we found a BBQ place attached to a gas station on Highway 9 just north of town called Smokin' Gold BBQ. With some friendly North Georgia ladies running the place they were so sweet. There was a sign announcing their special of 1/3 pound of Burnt End with sides and a drink. Joe and I usually order pulled pork. I asked what was their best BBQ and she said the Beef Brisket. What is "burnt end?" It is marinated brisket cooked in a smoker, then marinated again, and cooked some more in the smoker. The fat is caramelized with no fat showing and black on all sides. She gave Joe and I a chunk to taste and OH MY! It was sensational with my taste buds begging for more. Joe was sold too but we ordered the smaller sandwich which was plenty big. All around the room they displayed the trophies they have won and there are a bunch. It is worth a trip t take especially if you are in the Dahlonega area.
We found Tiffany Farms which is northwest of Dahlonega Square and Joe parked his beloved bright red Ford F150 pick up on the farm owner's field along with the rest of the crowd for the Equestrian Show competition hosted by North Georgia College. With the sky, bright blue and the air warm we had arrived just in time for Emily's event. We found her parents and Grandmother wisely sitting in the shade but we got up to get closer to the action. There was Miss Emily perched straight up majestically on a random horse competing for the first time against 5 other colleges and universities. She won 2nd place in the first round and later on that day, she won 1st place in the second round. Her parents and grandmother were so proud of Emily and rightfully so.
On our way back towards Atlanta I admired the huge displays of tall pink flowers in the median of GA400. The DOT plants them and they are a sight to see. I have a picture of them on my Facebook page.
Joe pulled into the North Georgia Premium Outlet Shopping Center in Dawsonvuille and I asked him why. We are going to CHICOS which he knows is my favorite clothes place but I did not need anything, They were having a Columbus Day sale which I did not realize how good it was. I bought one pair of capris, one pair of slacks, two tunic blouses, a long necklace and two pairs of earrings for only $82. Wow. Joe was pleased! While we were walking towards CHICOS, we ran into Nancy Meyers, one of the MPD Atlanta members who was shopping up there with her husband. She looked beautiful and fresh in her bright orange blouse and capris.
Joe called his sister Donna since she loves nearby and surprisingly Donna and Rick were at home watching Georgia shockingly beat the mighty Tennessee football team. We stopped by for a short visit to update them on Joe. Donna has been following the blog so she was already fulled aware.
When we got home, I decided to crash upstairs for a little bit since I was sleepy. I slept in a red Alaska tee shirt and snoozed away like a log. When I woke up at 7:15, Joe was already up so I just rolled over to sleep some more. It was then I saw that I had my red Alaskan tee shirt on and realized that it was 7:15 PM not AM. Groggingly I walked downstairs and Joe asked where we were going to dinner tonight. I told him to wait till I woke up fully and get my mind clearer. Geez, I am really sleeping soundly.
I recommended that we eat at Nino's on Cheshire Bridge Road since we had not been there in a long time. It proved to be a great pick since Joe ate his entire meal which is very unusual. He had the escargots, chicken Parmesan, and tiramasu, wine and coffee. He was happy and he will sleep great tonight.
We are both looking forward to Sunday and the events planned for that day.
Ciaoi,
Bonnie
On Thursday I fired off an e-mail to Dr. Keating and Dr. Badoux at MDACC asking more questions. Some of the questions were straight forward. One of which whether Joe to not do any treatment and just stay on INCYTE and about the stem cell transplant.
Dr. Badoux replied, "Joe will need chemotherapy prior to transplantation. We can always organize a transplant appointment for consultation and typing when he is here.
Mantle cell lymphoma is a heterogeneous disease and the prognosis is not poor for everyone! There is a good chance of response with treatment and I would not recommend doing nothing."
Dr Badoux comments gave me confidence plus along with the massive amount of reading I did, I truly believe that it is the best option at this time. I did ask him to set up a transplant consultation while we are there this coming week as well as typing done. The articles I read about the R-FCM combochemotherapy is that it is effective and that it can put the disease into remission for awhile. But, it will come back. Each time they do it after a remission period it is less effective. Joe will have four days of chemo this week then will have four days very month for up to six months. It is possible for it to have effect after three cycles. Some patients have had some serious side effects but MDACC has a proven treatment for each of them. Joe and I read some blogs about three patients adventures over a six months and later period of time. Knowing somewhat to expect is helpful.
I told Joe Thursday night at dinner at Chili's of the new diagnosis and what I had found out so far about it. I gave him the hard truth with of course some tears coming from me. Joe handled the news gallantly and brave. It is a blessing that he trusts me so much and that he knows with all his heart and mind that I will leave no stone unturned and fight for him with all my heart and mind. What a man! He is my rock on earth and gives me the courage to do whatever I think is the right thing. While we were there, the squealing in my eyes from the new hearing aids went to the painful stage. Joe could hear them from across the table with all the noise level in the bar area. It is no wonder thay I did not throw them against the wall. We sit in the bar area of Chili's since it is where we get the best service.
On Friday after my MRI, Joe and I went back to COSTCO in Dunwoody to the hearing aid department for the second day in a row. The day before I told them to remove Program 2 and put Program 1 back down to the original level. Well, they did take off Program 2 but they INCREASED the level of Program 1 that was already awful and made it TORTURE! Now, it is down to an acceptable level without the squealing. If it fails again, I will turn these in and get my money back and try a different model.
Since we were at COSTCO, I enticed Joe to buy the 55 inch HD LCD TV that was on sale for $998. The monstrous rear projection TV that is in the living room where Joe prefers to stretch out was fuzzy and we had gotten spoiled by the LCD TV in the den. With Joe recuperating from chemo and the continuing chemo for six months, I wanted him to have a great viewing experience and now he will. Now we have to find time to set it up.
Joe is now down to zero INCYTE and has tapered off of it quite well with additional tiredness but we expected that. Joe keeps saying to others that it proves the INCYTE really works at improving Quality of Life.
IN the last two weeks I have made sure that Joe and I go out to our favorite restaurants and he enjoys his favorite foods. It has been a very "rich" experience and Joe has really gotten his full. I wanted him to eat really good so his stamina would be better. Friday night we hit the Atlanta Fish Market where we had not been since 2/15/2008. The Buckhead Life Restaurant Chain has sent me a $25 off gift card for October so we took advantage of that. After cashing that in, they gave us another $25 gift card for November, They have some of our favorite nice restaurants. Joe had 1.5 pound fresh lobster and I had a lobster mixed scampi. We shared some velvety smooth creamy mashed potatoes and fresh tender green beans. Terrific meal and service. We will not stay away so long next time.
We came home to watch the Braves play the Giants. It was not fun watching the game since at the bottom of the 7th it was 4-1 and the Braves looked horrible. It was more than I could bear. We were both tired since it was late with them playing on the West Coast, so we went to bed thinking for sure, our Bravos would lose BUT......shockingly to us, we found out our Bravos won in 11 innings 5-4. They had tied it up in the 8th. So when we attend the game tomorrow (SUNDAY) at Turner Field the series will be tied. The Braves are really a miracle team with all their injuries of key players like Chipper and Prado. Joe and I will enjoy the day tomorrow. Our seats are in the upper level third base side above 3rd base in the 8th row. I will wear my big red hat which puts me as Bonnie in perfect form.
The steroids that I am taking for my right shoulder is suppose to make me stay awake but it has done the opposite. I suppose that the meds have reduced the pressure on the shoulder which has been more comfortable to sleep. I am so sound asleep and I have been sleeping late. What a huge blessing this is, since I am not laying awake thinking the worse of everything. It also has healed the sores in my mouth from the stress. Who would have thunk!
What a beautiful warm fall Saturday in Georgia to drive to Dahlonega to see Emily Bennett, our next door neighbor's daughter, compete in her first Equestrian Show as a freshman at North Georgia College. On the way there we found a BBQ place attached to a gas station on Highway 9 just north of town called Smokin' Gold BBQ. With some friendly North Georgia ladies running the place they were so sweet. There was a sign announcing their special of 1/3 pound of Burnt End with sides and a drink. Joe and I usually order pulled pork. I asked what was their best BBQ and she said the Beef Brisket. What is "burnt end?" It is marinated brisket cooked in a smoker, then marinated again, and cooked some more in the smoker. The fat is caramelized with no fat showing and black on all sides. She gave Joe and I a chunk to taste and OH MY! It was sensational with my taste buds begging for more. Joe was sold too but we ordered the smaller sandwich which was plenty big. All around the room they displayed the trophies they have won and there are a bunch. It is worth a trip t take especially if you are in the Dahlonega area.
We found Tiffany Farms which is northwest of Dahlonega Square and Joe parked his beloved bright red Ford F150 pick up on the farm owner's field along with the rest of the crowd for the Equestrian Show competition hosted by North Georgia College. With the sky, bright blue and the air warm we had arrived just in time for Emily's event. We found her parents and Grandmother wisely sitting in the shade but we got up to get closer to the action. There was Miss Emily perched straight up majestically on a random horse competing for the first time against 5 other colleges and universities. She won 2nd place in the first round and later on that day, she won 1st place in the second round. Her parents and grandmother were so proud of Emily and rightfully so.
On our way back towards Atlanta I admired the huge displays of tall pink flowers in the median of GA400. The DOT plants them and they are a sight to see. I have a picture of them on my Facebook page.
Joe pulled into the North Georgia Premium Outlet Shopping Center in Dawsonvuille and I asked him why. We are going to CHICOS which he knows is my favorite clothes place but I did not need anything, They were having a Columbus Day sale which I did not realize how good it was. I bought one pair of capris, one pair of slacks, two tunic blouses, a long necklace and two pairs of earrings for only $82. Wow. Joe was pleased! While we were walking towards CHICOS, we ran into Nancy Meyers, one of the MPD Atlanta members who was shopping up there with her husband. She looked beautiful and fresh in her bright orange blouse and capris.
Joe called his sister Donna since she loves nearby and surprisingly Donna and Rick were at home watching Georgia shockingly beat the mighty Tennessee football team. We stopped by for a short visit to update them on Joe. Donna has been following the blog so she was already fulled aware.
When we got home, I decided to crash upstairs for a little bit since I was sleepy. I slept in a red Alaska tee shirt and snoozed away like a log. When I woke up at 7:15, Joe was already up so I just rolled over to sleep some more. It was then I saw that I had my red Alaskan tee shirt on and realized that it was 7:15 PM not AM. Groggingly I walked downstairs and Joe asked where we were going to dinner tonight. I told him to wait till I woke up fully and get my mind clearer. Geez, I am really sleeping soundly.
I recommended that we eat at Nino's on Cheshire Bridge Road since we had not been there in a long time. It proved to be a great pick since Joe ate his entire meal which is very unusual. He had the escargots, chicken Parmesan, and tiramasu, wine and coffee. He was happy and he will sleep great tonight.
We are both looking forward to Sunday and the events planned for that day.
Ciaoi,
Bonnie
Thursday, October 7, 2010
More News for today 10/7/2020 MANTLE CELL LYMPHOMA
More butterflies in my stomach right now since I heard from one of Joe's Leukemia doctors at MDACC just a moment ago. I am not sure what it means but please pray as I research this evening. I am scared. Joe does not know yet. I need to get my emotions in check. Here is what he wrote since I sent an e-mail last night for an interpretation of the Lymphoma Panel. I am grateful that the doctor responded so I have time to research it. God bless. Here is what he said.
"Mr Evans' investigations are consistent with a Mantle Cell Lymphoma variant of chronic lymphocytic leukemia (CLL). These 2 conditions are closely related so the diagnosis is not always clear cut. This result is of some relevance as it helps us guide the treatment.
We recommend a treatment called FCM-R containing three chemotherapy drugs called fludarabine, cyclophosphamide, and mitoxantrone and an antibody called rituximab. This treatment has been very effective for both CLL and mantle cell lymphoma. We do expect that you will have some decrease in your counts initially and we will have to monitor this carefully. There is another commonly used treatment called HyperCVAD, however, we feel that this latter treatment may not be tolerated as well as the FCM-R. The treatment will take 3-4 days every month for 3 to 6 cycles depending on response.
We will discuss all the details during your appointment.
Please let me know if you have further questions."
Ciao,
Bonnie
"Mr Evans' investigations are consistent with a Mantle Cell Lymphoma variant of chronic lymphocytic leukemia (CLL). These 2 conditions are closely related so the diagnosis is not always clear cut. This result is of some relevance as it helps us guide the treatment.
We recommend a treatment called FCM-R containing three chemotherapy drugs called fludarabine, cyclophosphamide, and mitoxantrone and an antibody called rituximab. This treatment has been very effective for both CLL and mantle cell lymphoma. We do expect that you will have some decrease in your counts initially and we will have to monitor this carefully. There is another commonly used treatment called HyperCVAD, however, we feel that this latter treatment may not be tolerated as well as the FCM-R. The treatment will take 3-4 days every month for 3 to 6 cycles depending on response.
We will discuss all the details during your appointment.
Please let me know if you have further questions."
Ciao,
Bonnie
Thurday, October 7, 2020
Joe's energy level is decreasing which is expected since he is tapering off the INCYTE trial drug. He has decent energy in the morning then he knows to take breaks and time outs. His stomach looks much bigger to me which would be his spleen increasing from the INCYTE withdrawal.
This morning I misplaced my car keys, my sunglasses and my credit card. After a irritating search for at least an hour, I found them all. They were all in different places. I need to focus when I put something down. There is no doubt in my mind that it is stress related since our minds will react even if we think we are OK. Another stress related issue is that I get sores in my mouth that are nasty. You heard if the saying, " Well, just suck it in." It is what I do without realizing it. I suck the sides of my mouth that they rub on the teeth thus the sores. I do it during the day and have no idea I am doing it. I have a special mouth wash to numb it that does give me some relief. It aggravates me that I do it. Crazy, isn't it?
Last night it was LLS Support Chat On Line. Some of the people are the ones with leukemia or lymphoma. Some of us are caregivers. It lasts two hours but people come and go from the chat. The situations, that some have, are mind boggling and sad. I was disappointed that Phred from Texas was not on line since I knew that he was having a very difficult time the day before. He has health insurance issues and he lives alone. It is so cruel to have to handle everything alone. His computer also died so he is desperate for a new or borrowed one. If any one has an extra one, please let me know and I will ship it to him. My heart goes out to him. I tried to reach out to him today via texting on the phone but I could not get him to open up. I will keep trying. Lord, be with Phred.
My new hearing aids suck. After an adjustment yesterday, I had squeals about 60% of the time that I was ready to throw them at the wall. I drove back over to COSTCO today and they took program #2 off of them. It is somewhat better but I still get some squeals (feedback). Please Lord give me the patience to get them right and know when to give up and get a different type. For those who do not know, I have a 60% hearing lost in each ear since I was about 3 years old from having Inward Measles with a high fever for a number of days. It killed the nerves in my ears. My hearing issue did not come to light until I was in 5th grade when I went from an A student to an F student. It was the first time in school that I was sitting in back of a classroom. I did not know that I could not hear. Hearing specialists in NYC could do nothing for me and told my Mom to get me to learn lip reading. I did not get my first hearing aid till I was about 30 years old when my supervisor told me to get a hearing aid or be fired. There was no America's Disability Act back in 1974. I got a hearing aid even though past physicians did not think it would help. I excelled at the job and eventually took early retirement from that employer 21 years later. Every few years I get an ear medical expert to give me opinion but nothing has changed. So it is what it is so one just deals with it. I pray that I can get these new ones to work properly to assist me.
Tomorrow is my MRI at Emory Orthopedic to see of they can pin down my right shoulder issue. We shall see.
The grass we planted is coming up and looks great to see grass grow where it died from the prolonged drought. The key is to see if we can make it last. Green thumb, come to me! I do not feel too bad since most people in our subdivision who had fescue, their lawn is gone even though they had sod, sprinkler systems and yard people. I am carefully watering it to what is suggested.
Butterflies are in my stomach as we get closer to next week. Thank goodness we have some fun things planned this weekend to get both of our minds off next week.
God has been directing us the last thirteen years as well as the last month. I need to trust God that He will not give us any more than we can handle. I am so worried about Joe next week about his after effects from the FCR chemo. I am concerned whether if he has a rough time with the chemo and if it does not work and he goes through this challenge for no reason. I am not asking for words of wisdom from anyone. I am just letting my emotions out of this blog.
Peace be with you all,
Bonnie
This morning I misplaced my car keys, my sunglasses and my credit card. After a irritating search for at least an hour, I found them all. They were all in different places. I need to focus when I put something down. There is no doubt in my mind that it is stress related since our minds will react even if we think we are OK. Another stress related issue is that I get sores in my mouth that are nasty. You heard if the saying, " Well, just suck it in." It is what I do without realizing it. I suck the sides of my mouth that they rub on the teeth thus the sores. I do it during the day and have no idea I am doing it. I have a special mouth wash to numb it that does give me some relief. It aggravates me that I do it. Crazy, isn't it?
Last night it was LLS Support Chat On Line. Some of the people are the ones with leukemia or lymphoma. Some of us are caregivers. It lasts two hours but people come and go from the chat. The situations, that some have, are mind boggling and sad. I was disappointed that Phred from Texas was not on line since I knew that he was having a very difficult time the day before. He has health insurance issues and he lives alone. It is so cruel to have to handle everything alone. His computer also died so he is desperate for a new or borrowed one. If any one has an extra one, please let me know and I will ship it to him. My heart goes out to him. I tried to reach out to him today via texting on the phone but I could not get him to open up. I will keep trying. Lord, be with Phred.
My new hearing aids suck. After an adjustment yesterday, I had squeals about 60% of the time that I was ready to throw them at the wall. I drove back over to COSTCO today and they took program #2 off of them. It is somewhat better but I still get some squeals (feedback). Please Lord give me the patience to get them right and know when to give up and get a different type. For those who do not know, I have a 60% hearing lost in each ear since I was about 3 years old from having Inward Measles with a high fever for a number of days. It killed the nerves in my ears. My hearing issue did not come to light until I was in 5th grade when I went from an A student to an F student. It was the first time in school that I was sitting in back of a classroom. I did not know that I could not hear. Hearing specialists in NYC could do nothing for me and told my Mom to get me to learn lip reading. I did not get my first hearing aid till I was about 30 years old when my supervisor told me to get a hearing aid or be fired. There was no America's Disability Act back in 1974. I got a hearing aid even though past physicians did not think it would help. I excelled at the job and eventually took early retirement from that employer 21 years later. Every few years I get an ear medical expert to give me opinion but nothing has changed. So it is what it is so one just deals with it. I pray that I can get these new ones to work properly to assist me.
Tomorrow is my MRI at Emory Orthopedic to see of they can pin down my right shoulder issue. We shall see.
The grass we planted is coming up and looks great to see grass grow where it died from the prolonged drought. The key is to see if we can make it last. Green thumb, come to me! I do not feel too bad since most people in our subdivision who had fescue, their lawn is gone even though they had sod, sprinkler systems and yard people. I am carefully watering it to what is suggested.
Butterflies are in my stomach as we get closer to next week. Thank goodness we have some fun things planned this weekend to get both of our minds off next week.
God has been directing us the last thirteen years as well as the last month. I need to trust God that He will not give us any more than we can handle. I am so worried about Joe next week about his after effects from the FCR chemo. I am concerned whether if he has a rough time with the chemo and if it does not work and he goes through this challenge for no reason. I am not asking for words of wisdom from anyone. I am just letting my emotions out of this blog.
Peace be with you all,
Bonnie
Tuesday, October 5, 2010
Monday and Tuesday 10/4 and 10/5
On Monday 10/4 Joe reduced the INCYTE trial drug to a total of 10 mg a day. Joe claims he can feel the difference in his energy level but he keeps going and going. He continues to keep in a positive frame of mind.
On Monday afternoon Joe and I met with our pastor, Caleb Clarke, at his office at our church. The conversation gave Caleb an idea how we are handling things thus far. He had stated the congregation has us deep in their thoughts and prayers. Joe and I have gotten such strength from so many people prayer's across the world. It is very touching and humbling to know that there are so many people in our corner. Thank you from the both of us.
On Monday and Wednesday nights I participate with an on line chat for patients and caregivers who have one of the many forms of leukemia. Way too many have lost their jobs and no longer have health insurance coverage. Some are fighting their battles alone. Each has a story to tell but yet each person is real, compassionate and loving. The tales are heartbreaking but each one of us gains strength from each other. When one is fighting a life threatening disease, one gets comfort from others in the same boat or worse. If you are fighting something, there is a support group that could help you and help your love ones. You will learn so much. If you need help in finding one, please contact me and I will research it for you.
Today I had a follow up for my painful right shoulder/arm with my Emory Orthopedic at 10:30 AM. I was not seen till 11:47 AM and let the doctor know that I was unhappy with the wait. The staff should explain any delay to their patients instead of brushing them off. I told him that the cortisone shot he gave in the shoulder on 9/9 did not help at all and after three weeks of Physical Therapy it is worse. Now he wants to order a MRI of the neck! He feels 90% sure that the issue is in the neck because of the ineffectiveness of the shot and the pain worsening with physical therapy. I swear that it is in the shoulder joint and think the MRI should be of it. He disagreed. This afternoon I went to the Physical Therapist who twisted and pulled on my neck and he does not think it is the neck. I requested that he call my Orthopedic doctor and he said he would. I had asked the doctor whether the MRI could also be done on both the neck and shoulder at the same time but Doc said the MRI people do not like doing that since it is totally two different positions plus I would be in the machine trying to be still for one hour which would be very difficult. I wonder. I got a prescription to take steroids for a week which I am dreading since I have seen it blow up people in width. I do not need that. My self esteem is crappy already.
Since I was in the Perimeter area, I stopped by my hairdresser at Hair Clips to get my hair trimmed up. I have been going to the same hairdresser for about 20 years. I saw someone at the Tucker Walmart that had fabulous haircut and I asked her who did it and that is how I found my gal. In the same Georgetown Shopping Center there is Goldbergs who has great bagels and a fabulous rare roast beef sandwich so I had to stop there for lunch.
Tonight Joe and I had dinner at Prime at Lenox Square where this week it is Restaurant Week Special which consisted of a Wedge Blue Cheese Bacon Bits Salad, 8 oz perfectly cooked and tender New York Strip with au jus, fresh French Fries with garlic and Parmesan cheese, as well as a cheesecake for an amazing $25. I try to make all our restaurant reservations through OPEN TABLE where we earn points that one can cash out for a meal. We are up to 11,500 points which equals $115 if we cash it out now. I have used OPEN TABLE all across the United States as well as in Vancouver, Canada. It has valuable information such as comments from other people. Links for maps and the menus. Prime is one of our favorite restaurants in Atlanta and since we eat there so much, we belong to the "Friends of Tom" Club which gives you s discount on your meals. Hey, it all adds up. Joe and I belong to many restaurants VIP cards that cost nothing but you get all kinds of good stuff and coupons over the year including free birthday and anniversary meals.
I found out today that Cristy Bennett's 80 year old Dad, our wonderful neighbor, has bile duct cancer. A physician found it during an exam for his hurt back. Luckily they caught it at an early stage which is unusual since it normally found when it has spread quickly since one does not "feel" like there is anything wrong. Keep her Dad and Cristy in your prayers.
Thank you all for your support since it means the world to Joe and me. You are giving us strength with your prayers to the Almighty. We will make this journey a success with your help.
Ciao!
Bonnie
On Monday afternoon Joe and I met with our pastor, Caleb Clarke, at his office at our church. The conversation gave Caleb an idea how we are handling things thus far. He had stated the congregation has us deep in their thoughts and prayers. Joe and I have gotten such strength from so many people prayer's across the world. It is very touching and humbling to know that there are so many people in our corner. Thank you from the both of us.
On Monday and Wednesday nights I participate with an on line chat for patients and caregivers who have one of the many forms of leukemia. Way too many have lost their jobs and no longer have health insurance coverage. Some are fighting their battles alone. Each has a story to tell but yet each person is real, compassionate and loving. The tales are heartbreaking but each one of us gains strength from each other. When one is fighting a life threatening disease, one gets comfort from others in the same boat or worse. If you are fighting something, there is a support group that could help you and help your love ones. You will learn so much. If you need help in finding one, please contact me and I will research it for you.
Today I had a follow up for my painful right shoulder/arm with my Emory Orthopedic at 10:30 AM. I was not seen till 11:47 AM and let the doctor know that I was unhappy with the wait. The staff should explain any delay to their patients instead of brushing them off. I told him that the cortisone shot he gave in the shoulder on 9/9 did not help at all and after three weeks of Physical Therapy it is worse. Now he wants to order a MRI of the neck! He feels 90% sure that the issue is in the neck because of the ineffectiveness of the shot and the pain worsening with physical therapy. I swear that it is in the shoulder joint and think the MRI should be of it. He disagreed. This afternoon I went to the Physical Therapist who twisted and pulled on my neck and he does not think it is the neck. I requested that he call my Orthopedic doctor and he said he would. I had asked the doctor whether the MRI could also be done on both the neck and shoulder at the same time but Doc said the MRI people do not like doing that since it is totally two different positions plus I would be in the machine trying to be still for one hour which would be very difficult. I wonder. I got a prescription to take steroids for a week which I am dreading since I have seen it blow up people in width. I do not need that. My self esteem is crappy already.
Since I was in the Perimeter area, I stopped by my hairdresser at Hair Clips to get my hair trimmed up. I have been going to the same hairdresser for about 20 years. I saw someone at the Tucker Walmart that had fabulous haircut and I asked her who did it and that is how I found my gal. In the same Georgetown Shopping Center there is Goldbergs who has great bagels and a fabulous rare roast beef sandwich so I had to stop there for lunch.
Tonight Joe and I had dinner at Prime at Lenox Square where this week it is Restaurant Week Special which consisted of a Wedge Blue Cheese Bacon Bits Salad, 8 oz perfectly cooked and tender New York Strip with au jus, fresh French Fries with garlic and Parmesan cheese, as well as a cheesecake for an amazing $25. I try to make all our restaurant reservations through OPEN TABLE where we earn points that one can cash out for a meal. We are up to 11,500 points which equals $115 if we cash it out now. I have used OPEN TABLE all across the United States as well as in Vancouver, Canada. It has valuable information such as comments from other people. Links for maps and the menus. Prime is one of our favorite restaurants in Atlanta and since we eat there so much, we belong to the "Friends of Tom" Club which gives you s discount on your meals. Hey, it all adds up. Joe and I belong to many restaurants VIP cards that cost nothing but you get all kinds of good stuff and coupons over the year including free birthday and anniversary meals.
I found out today that Cristy Bennett's 80 year old Dad, our wonderful neighbor, has bile duct cancer. A physician found it during an exam for his hurt back. Luckily they caught it at an early stage which is unusual since it normally found when it has spread quickly since one does not "feel" like there is anything wrong. Keep her Dad and Cristy in your prayers.
Thank you all for your support since it means the world to Joe and me. You are giving us strength with your prayers to the Almighty. We will make this journey a success with your help.
Ciao!
Bonnie
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