Joe stamina is still weak; He eats so little and he tries to cover it up so that I will not notice what be leaves on his plate. But when he turns around I peek under the napkin and plate. We start the morning with a toasted bagel with light cream cheese at the New York Deli on Five Forks Trickum, Mrs Kim greets us cheerfully every morning. After eating I drive off to Bally's Fitness Center and do one hour and half of water aerobics. I usually am exercising much harder than my peers in the class. You get what you put into it. In the class there are about 30 people, when I do aerobics, Joe drives over to Lilburn Park where that have a nice level track and some other green trails. Joe had started with 2 laps last week when as started out exercise routine. He is now doing 4 laps around the track. We get home about the same time. We rest long enough to stop sweating, at times we have some chores to get done such as bill paying and investments, pick up the limbs off the grown, trim some bushes.
About 7pm I walked with Max around our block which is hilly and is about 1.5 miles long, I love walking so I can see what is going on in the neighborhood. AS one passes by walking or driving. each person waves to the other. There is a bunch of yard trimmings next to the road from all the thunderstorms that we had. The county did not pick all of it up. I do not think that they were expecting a big load. On Monday the hairless coyote spotted me at the beginning of Musket Lane. It was sitting in the middle of the street to keep his eye on me. The coyote has lost its hair with a bad case of mange, It sure looks quite weird looking. Coyote followed me down Musket Lane to Musket Court then he got lost in the bushes. He is alone and looks sad without his crew.
I used Joe's electric shaver to shave his face, chin, neck and ears. Joe is in heaven when I shave him since he finds it so relaxing. It is an act of love of course. Joe's cough is so much better right now but he has a nasty diarreha which occurs about 6 hours after he takes his morning pills; One night when I could not sleep I read the issues on the drugs. It is my opinion that the diarrhea is a reaction to Azithromycin which is one of the two antibiotics he takes for the mycobacterium gordonae. Joe body temperature is so messed up. One minute he is sweating profusely then another minute later he needs a blanket or a jacket to get rid of the cold. His appetite is very fair.
I had to do some straightening out of the future schedule for Joe medical appointments to get them changed for when we will be in Houston. I also had to reschedule several other appointments that were on days that we were no going to be there. I would send a secure email on mymdandrerson but nothing got corrected so I had to get more involved with calls and follow up to make sure that it is done. It can be a real challenge and Joe is glad that I handle it all. He just does not have a clear organized mind to get it done correctly.
Today I had sent an email to Dr Romaguera about Joe's peersistent explosive watery diarreha that happends in mid afternoon. I also told him about Joe's excessive sweats and extreme temperature, and fair appetite. He wanted Joe to see Dr Torres in the Infectious Disease Department but that would not be for 2 weeks which was too long a period of time .I set up an appointment with Dr Winton at Emory for tomorrow. I forward DR Romaguera's email which stated what he would do and why. So we go to Emory Joe will have his stool tested as well as additional blood tests to make sure Joe does not have another infection. I also told Dr Romaguera that I could not get an appointment for Joe to see Dr Torres in Infectious Disease until September. Romaguera would fix that and he did. I have got to get Catherine Lewis, Dr V's nurse to put his appointment on the schedule for 7/12 since we will be there only that one day. I have been trying to get it on the schedule for a week and it is still not there. I was succeccful in getting DR Schiffman's appointment moved to September when we will be there for a few days.
United Health Care finally paid the Home Care that I had to give Joe drugs via IV and even mix the crazy stuff. United kept rejecting the claim and I was getting worried since the price was up to $65000. I had called Applied Health Care about the bill and they told me not to worry about it. It was approved. They go through this with United Health Care each time. Phew I am glad that worked out.
Joe and I have enjoyed being homebodies so much that we hardly venture out of our little community. On July 20 I started exercising quite seriously with on Monday, Wednesday anda Friday I do an hour and a half of water aerobics at Bally's Gym. At night I walk 1.5 miles around our hilly neighborhood. On Tuesday and Thursdays I go back to Bally's Gym and ride a recumbent bike 13 miles then do 12 sets of 10 movements on the various weight machines. Every night I do the walk around the neighborhood where I take Max with me since Max also has weight to lose. Max gained 6 pounds since last March.
Early this morning we took Max to Banfield Animal Hospital to get his shots updated and that want very smoothy and efficient for a change. We need to get Max groomed on Friday so that is why his shots had to be updated. I think I caught Poison Ivy from Max on the inside of my left arm. What an itch! I asked the pharmacist at Walgreens for help. She helped find me the right ointment gel to use and to take Benedryl also.
Tomorrow we have to be at Emory at 8:30 AM for Joe's blood tests. then a stool test, followed by an appointment with DR Winton and Jessica Neely. I had to take a sleeping pill tonight since I only got two hours sleep last night. I also had a glorious two hour massage at Massage Envy today with Hannah.
I had spoken to Hollie Baker who had a Allo Stem Cell Transplant and she is finally out of the hospital and in an apartment 5 minutes from MDACC. She said there are 13 pages of side effects from a Stem Cell Transplant and she got every single side effect. She lost 40 pounds during the transplant process and her appetite is still poor. She sounded great on the phone and is so grateful for her husband, Johnnie. She is now allowed visitors so that makes Hollie a happy woman.
Good night since I am really tired tonight.
Bonnie
MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11
Wednesday, June 29, 2011
Thursday, June 23, 2011
6/23/11 Bonnie, where have you guys been?
Home, so sweet, Home! We got home on Sunday, June 12. It has taken this long for me to get the energy to write on the blog. The emotional roller coaster broke me down and I had to be rebuilt with new battery. Driving into our neighborhood with the large trees and homesites was emotional for the both of us. All we both wanted to do was nothing! Our desire was to be homebodies for as long as we needed. We unpacked the car and our luggage stayed unpacked for nearly a week. We valued watching TV in our home and on our couch. I had forgotten how great HDTV and a large screen was like. Heavenly, but after a week of do nothing, our batteries were recharged and started doing little things around the house and yard that needed doing.
Let me go back to that last jammed packed appointment week at MDACC. It took quite a toll on Joe. I had to intervene a few times as the bad guy to get things rolling or tell whoever that we were waiting too long and we would come back when we could. Joe had more eye exams, XRays, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with opthamologist, neurologists, radiologist, infectious disease, pulmingologist and lymphoma department. Appointment times were basically "suggestions" where the patient must show up at that time but God only knows how many hours it would take to be seen. The last day we started with neurology at 8:15AM and waited in the small windowless sterile exam room for two hours. We were already late for the next appointment. I walked out of the room looked all over the hallway and there was no one in sight. I walked out to the hallway to make a call to Patient Advocacy to tell them the waiting is ridiculous. They put me on HOLD what seemed forever......I looked through the little window opening when I saw the doctor walking quickly down the hall then poked into Joe's room. I had no smile when I walked in and Joe had no smile either. The doctor stated that the hospital has him running ragged and stretched too thin and he did not make enough money for all he had to do. I know. I could not believe he said that either. Stress gets to all of us. He stated that this would be short that Joe should stay on the Keppra for seizures and gave me a 90 day prescription script so I could order it via mail order. He tested Joe's various reflexes and we were gone in probably 5 minutes. Outrageous, isn't it?
Next stop was the crazy opthamologist at 10:30. Thankfully there were not many people in the waiting area so I thought this should be easy for us to make the next appointment with pulminology at 11AM. Joe got called back at 10:15 and at 11AM he was still back there. I had been told to stay in the waiting room. I called Joe on his cell phone, no answer! I text Joe on his cell phone, no response so I did what Bonnie would have to do. I barged into the exam area and there was Joe sitting in the hallway on a little chair. I said what the heck are you doing there. Waiting for the doc. How long will it be? The nurses heard my voice and said the doc would be with him in a few minutes and that he was next. Few minutes pass. Joe's color was awful and I could tell he was feeling really bad and that he was weak from the lack of food and liquids. I told the nurses that we could no longer wait since he was getting weak and we were already very late for the pulminologist appointment. The doctor comes out to see what the noise is all about. She was very condescending with Joe and asked him why he was so angry that she was going as fast as she could with each patient. I told her that we had waited for hours on Monday with her and we could not do that again today. Look at Joe, one can see he is getting weak. We are late for another appointment by an hour. The doc said that he could come back later that day but the nurse was going to have to dilate his eyes. Well, why we had to wait another 15 minutes for that to happen was nuts when we saw nurses running around looking for supplies and seemed disorganized. Eyes are now dilated and I take Joe to the pulminologist. The eye staff had called ahead and told them about Joe and that he was a bit miffed about the delays. A nurse saw Joe quickly and pronounced him OK though she was really startled when she saw that his eyes were dilated. We get out of there at about 11:15 and Joe has 20 minute window in which to eat to prep for the PET Exam. We ate in the cafeteria downstairs where we met Alan, Laura Caruthers and their son, Sammy, for lunch. Alan is getting ready for a Stem Cell Transplant and getting various tests and exams for it. He had had his spleen removed with complications about two months ago. He looked pretty good. We went back to the eye doctor again. We did not wait very long this time, When she came into the exam room. she says to Joe, Are you feeling any better? He says No but the eternal waiting is very stressful and trying to meet each appointment in a short period of time. After some more examination, she tells Joe that his type of eye defect is not caused by the medication he was taking, She wants him to have a CT scan of his head and orbital area before we left Houston. I told her that it had to be done by the next day since we were leaving to go back home to Atlanta. Would you believe, the appointment was scheduled for 5PM on a Friday?!!!
We headed over to Mays Clinic for the PET Scan and they took Joe back and I would not see him for several hours. The Meadors stopped by to say hello while I was waiting and we talked for an hour when Joe came out. Joe was starving so we all decided to go eat at the fabulous Cleburne's Cafeteria on Bisonnett Street not far from MDACC which has great homemade from scratch food with very generous portions. Randy Meador has had an auto and an allo stem cell transplant. He looks wonderful and has a fabulous attitude. Randy and Angela are such fun people to have dinner with once again.
Joe and I were both asleep by 10PM that night since we had to get early again for his last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr Oki for the final word on Thursday afternoon. I have forgotten all the places we had to go that day but we did not get to the Lymphoma Department until 4:30PM. There was only a few patients left in the waiting room but we finally saw Dr Oki since Dr Romaguera was out of town for several big medical conferences. It was a bit anticlimactic. It was Oki going over every test result with us where each stated NO LYMPHOMA. Joe was in complete remission and he needed to come back and be restaged in three months. When he opened the door, there was our dear Goley Richardson, Dr Romaguera's RN who is pictured on the top of the blog. I gave her a huge hug and then the tears of relief finally flowed down my cheeks into her hair. She gave Joe a hug also. I gave a hug to Dr Oki who finally gave us a big smile, He acknowledged that he knew that we really wanted to hear the news after all these months from Dr Romaguera. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's PICC/CVC line removed from his left arm. As we waited, I cried and Joe held me. I could feel his relief also and I was crying for the both of us. I could see the emotion in his eyes and body language. The tech was wonderful who took out the line. It was all real that this nightmare was over with and that we would be going home, really home and that the chemo was done and was successful. The PICC line is equal to a ball and chain so having it removed it like FREEDOM with an exclamation point!!!!!!! Yeah, free at last!
We slept very late on Friday and packed up the room so we would be able to leave on Saturday. We had lunch at the Brisket House. We headed over to the Mays CT Out Patient Clinic which the crazy opthamologist ordered and got there on time. Oh my, they took Joe back to the rooms at 5:3oPM. I was pacing the floor like crazy what seems like forever and met a daughter from Roswell, GA with her Mom who had cancer in her nose. I met another couple from South Texas. When the man got called back, I told him to check if another patient by the name of Joe was still alive. I think it was about 8:30PM when Joe finally came out. He said the CT can of the head was the hardest one that he had. With his persistent cough, he would have to press a button to stop the machine so he could cough. It was a very long ordeal and the noise of the machine and having to wear a helmet was a bit much. He was finally over all the testing and ready to get away from the Texas Medical Center.
Saturday we drove about 7.5 hours before we stopped for the night in Biloxi. We had dinner at a Country New Orleans Cajun Restaurant where the locals eat. Thankfully from YELP we ordered only one dinner and shared it and still had enough food left over for another meal for the both of us. The shrimp and oysters were so tender and tasty. It was nice to find a little local place to eat.
We got home on Sunday evening just as the Bennetts next door were coming home from Chad, their son's, wedding in Columbia. We had hoped to had been able to attend the big joyous event but the timing did not work out.
Since we have been home, I have been making better meal choices. The toll of the last 10 months had me gain nearly 40 pounds. I know that it is terrible but the stress of this time was very high and I had to keep Joe eating since he had lost 30 pounds. He was slim to begin with. This past week I started exercising in the morning for an hour at Bally's Fitness and walking for a half hour in our hilly neighborhood.
I am so proud of Joe's attitude where he accomplishes little tasks around the house. He is walking about a half mile a day and he will get stronger. His appetite is fair but he is eating but I doubt that it is enough for him to gain weight.
This pass Sunday it was wonderful being able to attend church service at Eastminster Presbyterian Church and see everyone who had prayed and followed Joe's journey. They cheered at his remission and will pray that his remission will last a long time.
Joe had a CBC today at Emory. His blood counts improved except his platelets dropped to 118 which is acceptable but below normal. His coloring looks good and he seems upbeat though he still gets tired quickly but at least he accepts it as a situation that will get better with time.
Joe still has Myelofibrosis per his last Bone Marrow Biopsy. It is graded as MF-2 per the European grading standards where MF-3 is the worse stage. Dr Verstovsek of the Leukemia Department wants to put Joe back on the INCYTE trial drug since Joe's Quality of Life was good with it. Joe will fly for an exam with Dr V in mid July at MDACC. Next week we will consult with Dr Winton of Winship Cancer Institute at Emory about the Myelofibrosis to get his opinion what Joe should do. Joe's sweats happen more often now and he has itching behind both ears which might be from the MF. I bought him some Benedryl to see if that relieves the itching since I read that it could help on the MPN Support Group on line. One can not take it long term cause of possible liver complications but I want to see if it helps him.
The medical community changed the name of MPD (the D is for Disorders) and MPN (the N is for Neoplasms) so the diseases can get more funding and research by designating it as a type of very slow leukemia. It sounds awful but if it helps find a cure then that would be a real gift to humanity.
I want to thank my blog and Facebook readers who donated to my niece, Jaclyn Garris, efforts to raise funds for the Leukemia and Lymphoma Society (LLS) by participating in the Nation's Triathlon to be held in Washington, DC on September 11. You can still donate and still help the cause. "Soon there will be a cure," as Mary states at the end of every Mantle Cell posting.
Faith. Hope and Charity! It is what keeps us going.
Blessings and thanks to all,
Let me go back to that last jammed packed appointment week at MDACC. It took quite a toll on Joe. I had to intervene a few times as the bad guy to get things rolling or tell whoever that we were waiting too long and we would come back when we could. Joe had more eye exams, XRays, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with opthamologist, neurologists, radiologist, infectious disease, pulmingologist and lymphoma department. Appointment times were basically "suggestions" where the patient must show up at that time but God only knows how many hours it would take to be seen. The last day we started with neurology at 8:15AM and waited in the small windowless sterile exam room for two hours. We were already late for the next appointment. I walked out of the room looked all over the hallway and there was no one in sight. I walked out to the hallway to make a call to Patient Advocacy to tell them the waiting is ridiculous. They put me on HOLD what seemed forever......I looked through the little window opening when I saw the doctor walking quickly down the hall then poked into Joe's room. I had no smile when I walked in and Joe had no smile either. The doctor stated that the hospital has him running ragged and stretched too thin and he did not make enough money for all he had to do. I know. I could not believe he said that either. Stress gets to all of us. He stated that this would be short that Joe should stay on the Keppra for seizures and gave me a 90 day prescription script so I could order it via mail order. He tested Joe's various reflexes and we were gone in probably 5 minutes. Outrageous, isn't it?
Next stop was the crazy opthamologist at 10:30. Thankfully there were not many people in the waiting area so I thought this should be easy for us to make the next appointment with pulminology at 11AM. Joe got called back at 10:15 and at 11AM he was still back there. I had been told to stay in the waiting room. I called Joe on his cell phone, no answer! I text Joe on his cell phone, no response so I did what Bonnie would have to do. I barged into the exam area and there was Joe sitting in the hallway on a little chair. I said what the heck are you doing there. Waiting for the doc. How long will it be? The nurses heard my voice and said the doc would be with him in a few minutes and that he was next. Few minutes pass. Joe's color was awful and I could tell he was feeling really bad and that he was weak from the lack of food and liquids. I told the nurses that we could no longer wait since he was getting weak and we were already very late for the pulminologist appointment. The doctor comes out to see what the noise is all about. She was very condescending with Joe and asked him why he was so angry that she was going as fast as she could with each patient. I told her that we had waited for hours on Monday with her and we could not do that again today. Look at Joe, one can see he is getting weak. We are late for another appointment by an hour. The doc said that he could come back later that day but the nurse was going to have to dilate his eyes. Well, why we had to wait another 15 minutes for that to happen was nuts when we saw nurses running around looking for supplies and seemed disorganized. Eyes are now dilated and I take Joe to the pulminologist. The eye staff had called ahead and told them about Joe and that he was a bit miffed about the delays. A nurse saw Joe quickly and pronounced him OK though she was really startled when she saw that his eyes were dilated. We get out of there at about 11:15 and Joe has 20 minute window in which to eat to prep for the PET Exam. We ate in the cafeteria downstairs where we met Alan, Laura Caruthers and their son, Sammy, for lunch. Alan is getting ready for a Stem Cell Transplant and getting various tests and exams for it. He had had his spleen removed with complications about two months ago. He looked pretty good. We went back to the eye doctor again. We did not wait very long this time, When she came into the exam room. she says to Joe, Are you feeling any better? He says No but the eternal waiting is very stressful and trying to meet each appointment in a short period of time. After some more examination, she tells Joe that his type of eye defect is not caused by the medication he was taking, She wants him to have a CT scan of his head and orbital area before we left Houston. I told her that it had to be done by the next day since we were leaving to go back home to Atlanta. Would you believe, the appointment was scheduled for 5PM on a Friday?!!!
We headed over to Mays Clinic for the PET Scan and they took Joe back and I would not see him for several hours. The Meadors stopped by to say hello while I was waiting and we talked for an hour when Joe came out. Joe was starving so we all decided to go eat at the fabulous Cleburne's Cafeteria on Bisonnett Street not far from MDACC which has great homemade from scratch food with very generous portions. Randy Meador has had an auto and an allo stem cell transplant. He looks wonderful and has a fabulous attitude. Randy and Angela are such fun people to have dinner with once again.
Joe and I were both asleep by 10PM that night since we had to get early again for his last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr Oki for the final word on Thursday afternoon. I have forgotten all the places we had to go that day but we did not get to the Lymphoma Department until 4:30PM. There was only a few patients left in the waiting room but we finally saw Dr Oki since Dr Romaguera was out of town for several big medical conferences. It was a bit anticlimactic. It was Oki going over every test result with us where each stated NO LYMPHOMA. Joe was in complete remission and he needed to come back and be restaged in three months. When he opened the door, there was our dear Goley Richardson, Dr Romaguera's RN who is pictured on the top of the blog. I gave her a huge hug and then the tears of relief finally flowed down my cheeks into her hair. She gave Joe a hug also. I gave a hug to Dr Oki who finally gave us a big smile, He acknowledged that he knew that we really wanted to hear the news after all these months from Dr Romaguera. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's PICC/CVC line removed from his left arm. As we waited, I cried and Joe held me. I could feel his relief also and I was crying for the both of us. I could see the emotion in his eyes and body language. The tech was wonderful who took out the line. It was all real that this nightmare was over with and that we would be going home, really home and that the chemo was done and was successful. The PICC line is equal to a ball and chain so having it removed it like FREEDOM with an exclamation point!!!!!!! Yeah, free at last!
We slept very late on Friday and packed up the room so we would be able to leave on Saturday. We had lunch at the Brisket House. We headed over to the Mays CT Out Patient Clinic which the crazy opthamologist ordered and got there on time. Oh my, they took Joe back to the rooms at 5:3oPM. I was pacing the floor like crazy what seems like forever and met a daughter from Roswell, GA with her Mom who had cancer in her nose. I met another couple from South Texas. When the man got called back, I told him to check if another patient by the name of Joe was still alive. I think it was about 8:30PM when Joe finally came out. He said the CT can of the head was the hardest one that he had. With his persistent cough, he would have to press a button to stop the machine so he could cough. It was a very long ordeal and the noise of the machine and having to wear a helmet was a bit much. He was finally over all the testing and ready to get away from the Texas Medical Center.
Saturday we drove about 7.5 hours before we stopped for the night in Biloxi. We had dinner at a Country New Orleans Cajun Restaurant where the locals eat. Thankfully from YELP we ordered only one dinner and shared it and still had enough food left over for another meal for the both of us. The shrimp and oysters were so tender and tasty. It was nice to find a little local place to eat.
We got home on Sunday evening just as the Bennetts next door were coming home from Chad, their son's, wedding in Columbia. We had hoped to had been able to attend the big joyous event but the timing did not work out.
Since we have been home, I have been making better meal choices. The toll of the last 10 months had me gain nearly 40 pounds. I know that it is terrible but the stress of this time was very high and I had to keep Joe eating since he had lost 30 pounds. He was slim to begin with. This past week I started exercising in the morning for an hour at Bally's Fitness and walking for a half hour in our hilly neighborhood.
I am so proud of Joe's attitude where he accomplishes little tasks around the house. He is walking about a half mile a day and he will get stronger. His appetite is fair but he is eating but I doubt that it is enough for him to gain weight.
This pass Sunday it was wonderful being able to attend church service at Eastminster Presbyterian Church and see everyone who had prayed and followed Joe's journey. They cheered at his remission and will pray that his remission will last a long time.
Joe had a CBC today at Emory. His blood counts improved except his platelets dropped to 118 which is acceptable but below normal. His coloring looks good and he seems upbeat though he still gets tired quickly but at least he accepts it as a situation that will get better with time.
Joe still has Myelofibrosis per his last Bone Marrow Biopsy. It is graded as MF-2 per the European grading standards where MF-3 is the worse stage. Dr Verstovsek of the Leukemia Department wants to put Joe back on the INCYTE trial drug since Joe's Quality of Life was good with it. Joe will fly for an exam with Dr V in mid July at MDACC. Next week we will consult with Dr Winton of Winship Cancer Institute at Emory about the Myelofibrosis to get his opinion what Joe should do. Joe's sweats happen more often now and he has itching behind both ears which might be from the MF. I bought him some Benedryl to see if that relieves the itching since I read that it could help on the MPN Support Group on line. One can not take it long term cause of possible liver complications but I want to see if it helps him.
The medical community changed the name of MPD (the D is for Disorders) and MPN (the N is for Neoplasms) so the diseases can get more funding and research by designating it as a type of very slow leukemia. It sounds awful but if it helps find a cure then that would be a real gift to humanity.
I want to thank my blog and Facebook readers who donated to my niece, Jaclyn Garris, efforts to raise funds for the Leukemia and Lymphoma Society (LLS) by participating in the Nation's Triathlon to be held in Washington, DC on September 11. You can still donate and still help the cause. "Soon there will be a cure," as Mary states at the end of every Mantle Cell posting.
Faith. Hope and Charity! It is what keeps us going.
Blessings and thanks to all,
Saturday, June 11, 2011
6/9/11 COMPLETE REMISSION! Thanks be to God.
After some very stressful busy days at MDACC cramming tests and numerous doctor visits, Joe was declared in COMPLETE REMISSION by Doctor Oki since Dr. Romaguera was out of the country until 6/21. All results showed no Mantle Cell Lymphoma. Praise be to God. We are so thankful that there are not enough words to state how we feel. We are experiencing a complexity of emotions.
More on what transpired will come when life slows down a little bit but I know how everyone was anxiously awaiting the news on the blog.
We start our trek home on Saturday morning and will be home on Sunday.
Stay Tuned. Thank you for your prayers and great thoughts that made us able to reach this goal with our bodies and minds somewhat still intact.
Ciao
More on what transpired will come when life slows down a little bit but I know how everyone was anxiously awaiting the news on the blog.
We start our trek home on Saturday morning and will be home on Sunday.
Stay Tuned. Thank you for your prayers and great thoughts that made us able to reach this goal with our bodies and minds somewhat still intact.
Ciao
Friday, June 10, 2011
Tuesday, June 7, 2011
6/7/11 IT'S A SMALL WORLD AFTER ALL!
Good Day so far! We started at Panera Bread for the usual sesame bagel. I made calls to MDACC to get Leukemia Department scheduler to schedule and order a full CBC with PTT so it will be ready for the Bone Marrow Biopsy (BMB) tomorrow AM. I had read on line late last night for BMB prep that a full blood test with PTT must completed within 48 hours of the test. The one Joe had on Monday as only partial blood test and did not have a PTT as well as it would be over 48 hours old. Thank Goodness I caught this since it would have created a mess and a huge delay. I ran into the grocery store to get Joe some OJ, Congratulation cards for the girls and a USA Today. When we got back to the room at 11:50 AM and I signed on to see if the CBC test was ordered. It was scheduled for 11:30AM. They must have thought that we were at MDACC when I had called earlier so we were already late before we even knew we were late. We hopped back in the car to MDACC and had the test done at the 8th Floor Leukemia Fast Track Lab. The Fast Track area was all brand new and so much more room than when we were last there in July 2010. They were efficient and quick. Next we headed to lunch at Luigis for a small pizza which was yummy good. Since we were so close to downtown, I drove over to Minute Maid Park and bought two Club level Baseball tickets 4th row, visitor side between third base and home. The Braves are playing the Houston Astros this weekend starting Friday night. Since it should be our last night in Houston, I splurged and got good seats. The Park is enclosed and kept at 72 degrees inside so it should be comfortable for Joe. It is a real treat for the both of us since we are huge Braves fans. Now we have a few hours of rest before we have dinner with some travel friends that we met in Valparaiso, Chile. It should be a delightful evening!
It is now 9PM and we have returned from our fantastic South American dinner with Don and Joanie Haley of Houston, Texas. They picked us up at our hotel. When we came out of the elevator, I recognized Joanie from her back since she was asking for Bonnie Evans but there was no Bonnie Evans at the hotel but there was a Kathleen Evans. I stated that I bet this lady is looking for “Bonnie” Evans but she could not find her at this hotel. Well, here I am. We gave each other a big warm hug and smiles and went to the waiting car. Don drove as we talked away a mile a minute catching us on news. They were amazed that we saw more of the Houston area than most Houstonians and we sure get around! The South American restaurant was called America’s and was decorated with unusual pizzazz and in bright colors. Our waiter, Salvatore, was from Palermo, Italy and did an amazing job waiting on us. Joe and I ordered steaks churraso and they were perfectly seasoned, hot, tasty and tender. All four of us shared one order of Tres Leche since so many of the reviews raved about it. It was scrumptious. As we were leaving the restaurant Joanie and I had to use the restroom. There were four doors. Three were marked Men and only one was for Women. This restaurant is nuts since it should be the other way around so Joanie went into the door marked Women’s and I went into the door marked Men’s. It was a beautiful well designed restroom. I came out before Joanie and I mentioned in the lobby to Joe that the restaurant had three men room and only one ladies room. The hostess heard me and said that I needed to open the women’s door and that there were eight stalls in there. You could have fooled me. She walked back there with me and opened the door. I thought I was in a Fun House with Mirrors at the Circus. The bathroom was a sight to see and each stall was like one of the Men’s Room. I was laughing pretty hard when Joanie came out of her stall. It was quite a surprise with the decorated black and white mirrors on all four sides and door stalls. I have not seen anything close to that since I was a little guy at the Fun House with all their wiggly mirrors. Upon leaving the restaurant Don and Joanie took us around the old grand part of River Oaks with all the Oil Magnets huge homes and walled lots with impeccable perfect landscapes. I love the Fig Ivy that they grow on the fences and sides of the homes. It is so flat and thick, lovely to look at. The immense old 100 year oaks that adorned the area were God’s gift to Houston. What a wonderful fun evening given to us by the generous Haleys. We have another wonderful memory to share on top of Chile. It is a small world after all!
Monday, June 6, 2011
6/6/11 BIG "D" WEEK
Early Monday 5/30, which was Memorial Day, Joe had to go to Diagnostic Testing to get his blood test then up to the Sarcoma Clinic for someone to review it. It was a very trying day since the constant waiting was finally getting to me. I felt like screaming but I knew it would not do any good plus there was a roomful of patients also waiting. Joe's platelets had dropped to a very low 6 thus he would need another 6 units of platelet transfusion. We left the Sarcoma Clinic at 9AM and the infusion appointment was not until 11:30 AM. So we had lunch at The Rotary House which was nice and quiet since it was a holiday. We got to the Infusion Department on time but were not called till about 1PM. It seemed like a full day. Once Joe was in a bed, we then had to wait for the platelets to show up. We waited and waited. There was an alarm going Bing, Bing, Bing, Bing every five seconds for about 10 minutes that finally got to me that I went looking for where the alarm was coming from. I located it near a phone where across the table was two nurses. I asked them what was the sound for. It was a patient alarm. I asked how could they stand that sound after 10 minutes of constantly beeping. They just turned away. When I went back to Joe's bed, the alarm finally was answered and stopped. Jeez! I wonder why? NOT! We waiting some more. It was getting to be infuriating. So I opened the curtains of Joe's area and kept it opened. Joe paged the nurse. I said we had been there an hour and 15 minutes on the bed and nothing was happening. Finally the platelets arrived and took about 45 minutes to be infused. He was done for 30 minutes before the RN came back to flush the lines so we could go. Thank God, we had finally left the building.
When we got back to the hotel home, we both crashed into bed from exhaustion and stress. We were not going to move so we ordered pizza at 8:30 PM from Barry's Pizza to be delivered.
On Tuesday, 5/31 Joe had a full day exam with the Flex Department at MDACC on the 7th floor with Dr Schiffman, an Opthamologist. Her office had left me a message that the tests and appointments would last as long as six hours so make plans for a long day. I am glad that they had left that message on my voice mail since I would have been impatient that it was taking so long. Joe had the most thorough eye exam ever and stated so. Not surprisingly there was a lot of waiting in between various tests and exams. It did not start so well when Joe was answering the doctor's questions and she would ask the same one over and over again. We were both starting to think she was a dingbat and she was thinking the same thing of Joe. The nurse had given her the wrong chart thus causing the communication bottleneck. So one can see why it is important that whoever is seeing you should ask you your name and patient number and compare it with the chart or look at the armband. After a three day weekend people get loose so I contribute it to getting back in the work mode.
Dr. Schiffman did also find a Visual Defect Impairment in both eyes which the Costco Optometrist had found during exam so Joe could get new glasses. She advised us that she found a very tiny tear in his Optic Nerve and that we should not worry about it. She requested us to go back to Costco to get the Visual Defect Impairment grid and bring it back to them. A MRI Scan of the head, neck with optical area would be ordered. I told her that on 6/10 we were planning to leave Houston to head back home to Atlanta and to instruct the scheduler to make the MRI appointment for the following week. She assured me that they would work with the Lymphoma Department to work it in at the same time as one of his other tests.
The evening of 5/31 I got a surprise call from my favorite niece, Jaclyn Garris. She asked us permission to train and compete in the Nation's Triathlon on 9/11/11 in her Uncle Joe's honor to raise funds for the wonderful Leukemia and Lymphoma Society or www.lls.org who assists in grants for research, provides education and support, as well as financial support to patients. She is in serious training and recently bought herself a racing bike.
Please donate to her efforts in honor of Joe. Even a little amount will help so many people. Here is the link to be able to donate.
http://pages.teamintraining.org/ncfl/nattri11/jgarris
On Wednesday, 6/1, Joe woke up and thought that it would be a great day to go to Galveston Beach and take Max with us. It sounded great to me so I drove down to Galveston from the main seawall to where the ship channel was and saw lines of tanker ships waiting to come in to get filled up with oil from one of the numerous refineries along the Main Land coast of Galveston Bay near Texas City. We had gotten out of the car with Max at the channel where no one was around so Max could be free to roam. I took a few photos and back into the car we went. Joe says to me, " I think we should have lunch on the way back to Houston off of Interstate 45." I had stated that there were some good restaurants located on the Galveston Strand where we could have some great seafood. I drove a few more blocks through the awesome Strand area of Galveston where there are some incredible Victorian Homes where I took from photos from the driver's seat. I am the one who drives everywhere during out time in Texas since I have gotten to know my way around so well. I drive down the Strand and I see some enticing shops that I would love to go into but noooooo, Joe says, "I want to go back to Houston now and eat there." I asked him if he were sick and he said no! I did not believe him. I was not a happy wife, caregiver, or person to drive that far to spend a few minutes. This is becoming a habit with Joe where we go someplace and he wants to leave very quickly. Why the heck even go? Before we left for Galveston, I had asked if he was sure he was up to doing the trip since I did not want him to feel that he had to make sure that I kept myself entertained. He stated that he was up to it. I am not going to do this with him again. He did that to me in San Antonio where we spent one night and came back right away. He did it in Dallas when we visited Julie and her family and when home after one night. If I am going to do something, I am going to do it by myself without him. Thank Goodness I went to Victoria by myself.
On Thursday, June 2, it was time for another blood test to see if Joe needed any transfusions. His platelets were at 7 so we headed to the 2nd floor transfusion department. It was another long day of waiting for all the pieces to fit together. Unfortunately we did not leave until 7:30PM. My endurance for patience is getting less and less perhaps it is because I think that we are getting closer to this being over with so we could head home on 6/10. Since Joe's platelets were so low, the RN said that Joe will be scheduled to come back in on Saturday.
I had gotten a text with a photo of my granddaughters from my daughter in law of them in their swimsuits competing in their first swim meet. Emily, the 6 year old, came in second on two races which made happy faces on Joe and me. Samantha, the 12 year old, came in fourth in her races. I appreciate it so much when I get news of the kids achievements since we can not be there. Hopefully Joe and I will be able to see them compete since the races continue to the end of July.
On Friday I got two sad pieces of news. One of my first boyfriends from High School when I was in 9th grade passed away after losing his fight with cancer. He was one of a kind and my dance partner where we did a wild Twist to Chubby Checker! I also found out that one of my retired peers from Household Finance, Fred Johnson,received news that he had Large Cell Diffuse Lymphoma, a type of Non-Hodgins Lymphoma. Joe has the Mantle Cell Lymphoma which is also a type of Non-Hodgins Lymphoma. I e-mailed Fred a bunch of links to learn about the disease, treatments and support.
I spent most of the day trying to get someone to schedule Joe's blood test for Saturday since it fell through the cracks on Thursday. I finally got word late Friday that Joe was put on the schedule. It can be challenging making all the pieces fall in a line together. If I do not get a response, I keep contacting someone else on the ladder until I do. This time it took me about four tries!
Saturday morning, 6/4, we were back at the 2nd floor Diagnostic Testing and back up to the Sarcoma Floor to get the results. GREAT NEWS! Joe did not need platelets since it jumped up to 38 from 7 in just two days. Joe and I were smiling ear to ear. We bounced down the hall in a celebrating mood. Yea!
We decided to celebrate the day's good news by going to dinner at Villagios on San Felipe, not far from out hotel The temperature had hit 100 degrees on Saturday breaking all previous records. We were directed to our favorite table but Joe wanted to eat outside since he was too cold inside. Big Mistake! After about 10 minutes being outside, I started to perspire like a wet towel. I kept wiping my face with my napkin but I never complained. Joe ate his salad and a piece of bread. When the main course came, Joe ate maybe two bites of his Lasagna and said he was not hungry. Again, I asked him if he felt okay and said that he just was not hungry. I proceeded to eat my delicious cannelonni with a creamy mushroom sauce that was outstanding. Joe turned to get the waiter to bring the check. I told Joe to stop that since I had only started to eat my meal. He was rushing me which was rude. He fidgeted while I ate my meal faster than I wanted to but I did finish my meal and my glass of wine. As soon as I placed my fork and knife on my plate at am angle, he got up and went into the restaurant to pay the check. As I drove back to the hotel, he said that he made a big mistake in making the decision to eat outside. I went with his decision since I try hard to make sure he is comfortable so he can eat decently and enjoy his meal. Bonnie learns another lesson.
Sunday, 6/5, Joe and I attended service at St Philips Presbyterian Church near our hotel. It was World Communion Sunday and we both gave thanks to God that Joe is making progress on being released from the Lymphoma department. We also prayed for so many of our friends fighting cancer or other life's challenges. The list is very long.
On Sunday afternoon, I got stir crazy and could not stay another minute in the hotel room watching Golf. If Tiger is not in the race, I am not interested in watching slow moving Golf on TV. I told Joe that I was heading over to Galleria Mall to walk around. He said he would come. I told him that I thought it would be better if he didn't since I did not want to go for only a few minutes then come back. Thankfully, he agreed to stay put and rest. I probably spent two hours walking around the mall. My favorite part was watching from the sidelines the ice skaters on the skating rink where it was cooler and more comfortable. I had a small lunch while sitting there taking it all in and remembering times in my past when I use to love to skate and the time the boys went skating with their grandparents when the Omni (now CNN Center) had their ice skating rink.
When I got back to the hotel, Joe was happy and in a good mood. I had been researching trips to take that I felt Joe could handle. When I got a travel alert that tickets to Honolulu were only $400 round trip from Atlanta, I made my move. I bought tickets for 1/10/12 and return to Atlanta on 2/10. Joe hates the winter in Atlanta and since he has had the chemo, his hot/cold body comfort level is a mess. It was 106 degrees on Sunday which was the hottest day in Houston EVER. Joe carries a flannel shirt around with him to keep him warm. We will spend half the time on Waikiki and the rest of the time in Maui which are our two favorite places. It is also a huge plus that it is still the United States thus health insurance is still good. We have used some of the medical places in Hawaii and were pleased with their care.
Since Joe was having a PET Scan at 3PM on Monday, his diet became very restrictive starting at dinner time where he was not allowed to have any carbohydrates meaning bread, pasta, potatoes or dessert. I took the directions with me and read all the restrictions to him for dinner and for Monday morning. He said he understood and that he could so it. Dinner he had a salad with no croutons, a small fillet of beef and veggies. He ate all but half of his veggies.
When I woke up on Monday morning (today), Joe was already up and standing in the kitchen taking his medicine with Orange Juice. I say what are you drinking. Joe: Orange Juice. Bonnie: Remember what we talked about last night at dinner. Joe: Oh, I only took a few sips and I will take the rest with water. Bonnie: Good Grief, Joe. You need to remember stuff. I hope it is not going to interfere with the PET Scan since you were only allowed water and decaf coffee, eggs and meat. We headed over to IHOP so Joe could eat two eggs and bacon which was all he could have up to 9:00 AM. After 9, no food, just water, no candy, mints, zilch. Since I was there, he didn't. Joe had his blood test first and his platelets were at 117 from 38 on Saturday. Joe is on his way to recovery from the last chemo. His white blood count was elevated at 35.1 but that was because of all the shots of neupogin which energizes the production of the WBC. His red blood count was at 4.85 in the normal range. The hemoglobin was 13.3 not too far from a low normal of 14. His hematocrit was in the normal range at 41. Good news indeed. We had from 10AM to 3PM to waste time before the PET scan over at the wonderful Mays Clinic 6th Floor. I had some running around to do such as faxing a rental agreement for the Maui rental for two weeks. I had copies to make of Costco's eye grid on Joe's Visual Defect the the Flex Department wanted. I delivered the report to Terry in Dr Schiffman's office. I also changed the July 1, MRI appointment of Joe's head to 6/10 so we could get all the tests done before we head home. The only opening left was 4:30 PM on 6/10 which means we would not get to leave to go back to Atlanta until Saturday 6/11 and arrive back home on Sunday evening on 6/12 IF Joe gets the expected release from the Lymphoma Department. On the other hand, I get my wish of attending the Braves/Astro game on Friday night on 6/10 at Minute Maid Park. Yippee!
The PET Scan department at the Mays Clinic is efficiently run since Joe was called back for the prep at 2:50PM (yep, early). I did not expect to see him back till about 6PM so I thought that I would have three hours to catch up on the blog. I was about halfway done when our friends, Randy and Angela Meador of Collierville, TN came by to say hello. Randy also had Mantle Cell Lymphoma and has had both an Auto Stem Cell Transplant and an Allo Stem Cell Transplant. They have had quite a journey. They are delightful people to talk with so we talked nonstop catching up on each others lives. At 5:15Pm here comes Joe who had finished his PET Scan. Wow, that was a surprise. Randy asked Joe if he was hungry and Joe said he was starving. How about Cleburne's Cafeteria. Perfect says Joe. The four of us enjoyed not only the home cooked meals but also the continued lively conversation. It was a great way to end Monday.
Tuesday, 6/7, we have the whole day off to rest. Joe will need it since both Wednesday and Thursday are jammed packed with tests and appointments from early in the morning till late in the afternoon. Tomorrow we have a dinner date planned with Joanie and Don Haley who live and work nearby where we are staying. We met Joanie and Don in Valparaiso, Chile last year at the Robinson Crusoe Hotel where we both were staying. I invited them to join us for the walking tour of Valparaiso with Michael the German Pirate. We all loved the tour and learned so much about the very artistic city on the steep hills by the Pacific Ocean. Small world isn't it and so very special that we will see each other again after enjoying our tour day in Chile.
Ciao my dear people. Please continue to pray for a cure for all cancers.
Bonnie
When we got back to the hotel home, we both crashed into bed from exhaustion and stress. We were not going to move so we ordered pizza at 8:30 PM from Barry's Pizza to be delivered.
On Tuesday, 5/31 Joe had a full day exam with the Flex Department at MDACC on the 7th floor with Dr Schiffman, an Opthamologist. Her office had left me a message that the tests and appointments would last as long as six hours so make plans for a long day. I am glad that they had left that message on my voice mail since I would have been impatient that it was taking so long. Joe had the most thorough eye exam ever and stated so. Not surprisingly there was a lot of waiting in between various tests and exams. It did not start so well when Joe was answering the doctor's questions and she would ask the same one over and over again. We were both starting to think she was a dingbat and she was thinking the same thing of Joe. The nurse had given her the wrong chart thus causing the communication bottleneck. So one can see why it is important that whoever is seeing you should ask you your name and patient number and compare it with the chart or look at the armband. After a three day weekend people get loose so I contribute it to getting back in the work mode.
Dr. Schiffman did also find a Visual Defect Impairment in both eyes which the Costco Optometrist had found during exam so Joe could get new glasses. She advised us that she found a very tiny tear in his Optic Nerve and that we should not worry about it. She requested us to go back to Costco to get the Visual Defect Impairment grid and bring it back to them. A MRI Scan of the head, neck with optical area would be ordered. I told her that on 6/10 we were planning to leave Houston to head back home to Atlanta and to instruct the scheduler to make the MRI appointment for the following week. She assured me that they would work with the Lymphoma Department to work it in at the same time as one of his other tests.
The evening of 5/31 I got a surprise call from my favorite niece, Jaclyn Garris. She asked us permission to train and compete in the Nation's Triathlon on 9/11/11 in her Uncle Joe's honor to raise funds for the wonderful Leukemia and Lymphoma Society or www.lls.org who assists in grants for research, provides education and support, as well as financial support to patients. She is in serious training and recently bought herself a racing bike.
Please donate to her efforts in honor of Joe. Even a little amount will help so many people. Here is the link to be able to donate.
http://pages.teamintraining.org/ncfl/nattri11/jgarris
On Wednesday, 6/1, Joe woke up and thought that it would be a great day to go to Galveston Beach and take Max with us. It sounded great to me so I drove down to Galveston from the main seawall to where the ship channel was and saw lines of tanker ships waiting to come in to get filled up with oil from one of the numerous refineries along the Main Land coast of Galveston Bay near Texas City. We had gotten out of the car with Max at the channel where no one was around so Max could be free to roam. I took a few photos and back into the car we went. Joe says to me, " I think we should have lunch on the way back to Houston off of Interstate 45." I had stated that there were some good restaurants located on the Galveston Strand where we could have some great seafood. I drove a few more blocks through the awesome Strand area of Galveston where there are some incredible Victorian Homes where I took from photos from the driver's seat. I am the one who drives everywhere during out time in Texas since I have gotten to know my way around so well. I drive down the Strand and I see some enticing shops that I would love to go into but noooooo, Joe says, "I want to go back to Houston now and eat there." I asked him if he were sick and he said no! I did not believe him. I was not a happy wife, caregiver, or person to drive that far to spend a few minutes. This is becoming a habit with Joe where we go someplace and he wants to leave very quickly. Why the heck even go? Before we left for Galveston, I had asked if he was sure he was up to doing the trip since I did not want him to feel that he had to make sure that I kept myself entertained. He stated that he was up to it. I am not going to do this with him again. He did that to me in San Antonio where we spent one night and came back right away. He did it in Dallas when we visited Julie and her family and when home after one night. If I am going to do something, I am going to do it by myself without him. Thank Goodness I went to Victoria by myself.
On Thursday, June 2, it was time for another blood test to see if Joe needed any transfusions. His platelets were at 7 so we headed to the 2nd floor transfusion department. It was another long day of waiting for all the pieces to fit together. Unfortunately we did not leave until 7:30PM. My endurance for patience is getting less and less perhaps it is because I think that we are getting closer to this being over with so we could head home on 6/10. Since Joe's platelets were so low, the RN said that Joe will be scheduled to come back in on Saturday.
I had gotten a text with a photo of my granddaughters from my daughter in law of them in their swimsuits competing in their first swim meet. Emily, the 6 year old, came in second on two races which made happy faces on Joe and me. Samantha, the 12 year old, came in fourth in her races. I appreciate it so much when I get news of the kids achievements since we can not be there. Hopefully Joe and I will be able to see them compete since the races continue to the end of July.
On Friday I got two sad pieces of news. One of my first boyfriends from High School when I was in 9th grade passed away after losing his fight with cancer. He was one of a kind and my dance partner where we did a wild Twist to Chubby Checker! I also found out that one of my retired peers from Household Finance, Fred Johnson,received news that he had Large Cell Diffuse Lymphoma, a type of Non-Hodgins Lymphoma. Joe has the Mantle Cell Lymphoma which is also a type of Non-Hodgins Lymphoma. I e-mailed Fred a bunch of links to learn about the disease, treatments and support.
I spent most of the day trying to get someone to schedule Joe's blood test for Saturday since it fell through the cracks on Thursday. I finally got word late Friday that Joe was put on the schedule. It can be challenging making all the pieces fall in a line together. If I do not get a response, I keep contacting someone else on the ladder until I do. This time it took me about four tries!
Saturday morning, 6/4, we were back at the 2nd floor Diagnostic Testing and back up to the Sarcoma Floor to get the results. GREAT NEWS! Joe did not need platelets since it jumped up to 38 from 7 in just two days. Joe and I were smiling ear to ear. We bounced down the hall in a celebrating mood. Yea!
We decided to celebrate the day's good news by going to dinner at Villagios on San Felipe, not far from out hotel The temperature had hit 100 degrees on Saturday breaking all previous records. We were directed to our favorite table but Joe wanted to eat outside since he was too cold inside. Big Mistake! After about 10 minutes being outside, I started to perspire like a wet towel. I kept wiping my face with my napkin but I never complained. Joe ate his salad and a piece of bread. When the main course came, Joe ate maybe two bites of his Lasagna and said he was not hungry. Again, I asked him if he felt okay and said that he just was not hungry. I proceeded to eat my delicious cannelonni with a creamy mushroom sauce that was outstanding. Joe turned to get the waiter to bring the check. I told Joe to stop that since I had only started to eat my meal. He was rushing me which was rude. He fidgeted while I ate my meal faster than I wanted to but I did finish my meal and my glass of wine. As soon as I placed my fork and knife on my plate at am angle, he got up and went into the restaurant to pay the check. As I drove back to the hotel, he said that he made a big mistake in making the decision to eat outside. I went with his decision since I try hard to make sure he is comfortable so he can eat decently and enjoy his meal. Bonnie learns another lesson.
Sunday, 6/5, Joe and I attended service at St Philips Presbyterian Church near our hotel. It was World Communion Sunday and we both gave thanks to God that Joe is making progress on being released from the Lymphoma department. We also prayed for so many of our friends fighting cancer or other life's challenges. The list is very long.
On Sunday afternoon, I got stir crazy and could not stay another minute in the hotel room watching Golf. If Tiger is not in the race, I am not interested in watching slow moving Golf on TV. I told Joe that I was heading over to Galleria Mall to walk around. He said he would come. I told him that I thought it would be better if he didn't since I did not want to go for only a few minutes then come back. Thankfully, he agreed to stay put and rest. I probably spent two hours walking around the mall. My favorite part was watching from the sidelines the ice skaters on the skating rink where it was cooler and more comfortable. I had a small lunch while sitting there taking it all in and remembering times in my past when I use to love to skate and the time the boys went skating with their grandparents when the Omni (now CNN Center) had their ice skating rink.
When I got back to the hotel, Joe was happy and in a good mood. I had been researching trips to take that I felt Joe could handle. When I got a travel alert that tickets to Honolulu were only $400 round trip from Atlanta, I made my move. I bought tickets for 1/10/12 and return to Atlanta on 2/10. Joe hates the winter in Atlanta and since he has had the chemo, his hot/cold body comfort level is a mess. It was 106 degrees on Sunday which was the hottest day in Houston EVER. Joe carries a flannel shirt around with him to keep him warm. We will spend half the time on Waikiki and the rest of the time in Maui which are our two favorite places. It is also a huge plus that it is still the United States thus health insurance is still good. We have used some of the medical places in Hawaii and were pleased with their care.
Since Joe was having a PET Scan at 3PM on Monday, his diet became very restrictive starting at dinner time where he was not allowed to have any carbohydrates meaning bread, pasta, potatoes or dessert. I took the directions with me and read all the restrictions to him for dinner and for Monday morning. He said he understood and that he could so it. Dinner he had a salad with no croutons, a small fillet of beef and veggies. He ate all but half of his veggies.
When I woke up on Monday morning (today), Joe was already up and standing in the kitchen taking his medicine with Orange Juice. I say what are you drinking. Joe: Orange Juice. Bonnie: Remember what we talked about last night at dinner. Joe: Oh, I only took a few sips and I will take the rest with water. Bonnie: Good Grief, Joe. You need to remember stuff. I hope it is not going to interfere with the PET Scan since you were only allowed water and decaf coffee, eggs and meat. We headed over to IHOP so Joe could eat two eggs and bacon which was all he could have up to 9:00 AM. After 9, no food, just water, no candy, mints, zilch. Since I was there, he didn't. Joe had his blood test first and his platelets were at 117 from 38 on Saturday. Joe is on his way to recovery from the last chemo. His white blood count was elevated at 35.1 but that was because of all the shots of neupogin which energizes the production of the WBC. His red blood count was at 4.85 in the normal range. The hemoglobin was 13.3 not too far from a low normal of 14. His hematocrit was in the normal range at 41. Good news indeed. We had from 10AM to 3PM to waste time before the PET scan over at the wonderful Mays Clinic 6th Floor. I had some running around to do such as faxing a rental agreement for the Maui rental for two weeks. I had copies to make of Costco's eye grid on Joe's Visual Defect the the Flex Department wanted. I delivered the report to Terry in Dr Schiffman's office. I also changed the July 1, MRI appointment of Joe's head to 6/10 so we could get all the tests done before we head home. The only opening left was 4:30 PM on 6/10 which means we would not get to leave to go back to Atlanta until Saturday 6/11 and arrive back home on Sunday evening on 6/12 IF Joe gets the expected release from the Lymphoma Department. On the other hand, I get my wish of attending the Braves/Astro game on Friday night on 6/10 at Minute Maid Park. Yippee!
The PET Scan department at the Mays Clinic is efficiently run since Joe was called back for the prep at 2:50PM (yep, early). I did not expect to see him back till about 6PM so I thought that I would have three hours to catch up on the blog. I was about halfway done when our friends, Randy and Angela Meador of Collierville, TN came by to say hello. Randy also had Mantle Cell Lymphoma and has had both an Auto Stem Cell Transplant and an Allo Stem Cell Transplant. They have had quite a journey. They are delightful people to talk with so we talked nonstop catching up on each others lives. At 5:15Pm here comes Joe who had finished his PET Scan. Wow, that was a surprise. Randy asked Joe if he was hungry and Joe said he was starving. How about Cleburne's Cafeteria. Perfect says Joe. The four of us enjoyed not only the home cooked meals but also the continued lively conversation. It was a great way to end Monday.
Tuesday, 6/7, we have the whole day off to rest. Joe will need it since both Wednesday and Thursday are jammed packed with tests and appointments from early in the morning till late in the afternoon. Tomorrow we have a dinner date planned with Joanie and Don Haley who live and work nearby where we are staying. We met Joanie and Don in Valparaiso, Chile last year at the Robinson Crusoe Hotel where we both were staying. I invited them to join us for the walking tour of Valparaiso with Michael the German Pirate. We all loved the tour and learned so much about the very artistic city on the steep hills by the Pacific Ocean. Small world isn't it and so very special that we will see each other again after enjoying our tour day in Chile.
Ciao my dear people. Please continue to pray for a cure for all cancers.
Bonnie
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