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