Shame on me for not keeping the blog updated. The reason is I lacked the energy to write it. When I start, I keep going like the energizer bunny. The bunny runs out of juice because she relives the same path over again. Much has happened since I last wrote so the next paragraph
Dr Winton at Emory advised us that he thought it was a good idea for Joe to get back on INCYTE if allowed. Joe's last blood test at Emory still showed elevated White Blood Count at 16 whereas normal is between 4 and 11. It is not too bad for someone with Myelofibrosis but the worry was that the white cells would start to increase incrementally once again. The platelet account was a low 79 where normal runs between 140 and 440. The low count was not critical for one with myelofibrosis but must be watched for lower counts and excessive bleeding. The results of the stool sample thankfully showed no bad infection which seems to confirm my "doctoring" that the cause for the diarrehha was the antibiotics. Dr. Winton told Joe that he did terrific on the chemo and congratulated him on his remission. Joe did as good as could be expected. It was a great confirmation and relief to Joe and me to hear Dr Winton state it.
On Saturday night, July 3, we drove up to Alpharetta to have dinner with Joe's sister, Donna, and her husband, Rick, at Pappadreaux off of Mansell Road. There was hardly anyone in the restaurant which was a real surprise since we always had to endure a long wait. Perhaps it was slow cause it was July 4th weekend. We enjoyed a drink before dinner. It seemed like a long wait to get our order and finally a server bought all the dishes out on one of those large oval trays. The server judgment was off since he put the tray down in an off balanced manner. He served Joe's and my order when Donna yelled out. "Watch Out!" Yep, both their orders ended up on the floor. The guy mumbled something under his breathe but never apologized. Donna and Rick insisted us on eating our dinner while they waited for their meal to be made all over again. Joe and I had the Costa Rican Tilapia Layfayette which was fabulous with grilled tilapia topped with fresh tasty lump crabmeat, shrimp, tomatoes, capers and basil in buerre blanc with fresh green beans and a ridiculously tasty spaghetti squash which was hard to believe that it was squash. Thank goodness we ordered the small size since it was enough for a normal human being. It was another thirty minutes before Rick and Donna were served and the management apologized for the mishap. The manager did not charge them for their meals which was a class act.
On the previous Thursday Donna had some abnormal cells removed in one of her breasts where the cells showed up on her routine annual mammogram. The growth was too small to even feel. She felts great and her surgeon said he got all of it and sent it to the pathologist. Donna was optimistic that all was fine since about five years ago she had the same thing done and it was non-malignant. She would get the results in about a week or so. (UPDATE) Donna's tissue sample was malignant and in the very early stages. A lumpectomy was performed on Thursday, July 21 which went very well.
On July 4th evening, Joe and I celebrated by going to the Atlanta Braves game. The temperatures were great for a July evening because of cloud cover. I had purchased Club Level seats so if Joe got uncomfortable he could go inside where it was air-conditioned. The game was great since the Braves won and we got to see the fabulous fireworks after the game. Our seats were at an angle so I had to move to get photos at a better angle. I moved towards my right till I could get a better view. When the fireworks were over, I could not find Joe. I looked over to where I thought we had been seated and did not see him so I went into the interior where there were mobs of people piling out of the stadium. I stood there looking back and forth for Joe's bald head and alas, no Joe. For those who know Joe, know that he has a tendency of going off and no one knows where he is. I tried to call him on the cell phone maybe ten times and there was no answer. I prayed that he had my purse with him where ever he was. I decided to go to the car since I decided that he must be there. Outside the stadium it was raining and Joe had the umbrellas. I called on the phone again still nothing. Finally he called me but I could not hear him and I said I hoped he had my purse and was at the car. Cell phone goes dead. I get to the car in the Nalley Lot and Joe is not there. Oh my, where the heck is he! Rain pours down harder making me soaked to the underwear but sweating since I was worried about him. I decided to stay put near the car but pacing back and forth like a tigress. Ten minutes later here comes Joe trotting slowly through the parking lot. He shows me his cell phone and says that it was dead so that is why we could not hear each other. He says he was in our original seats and waited for me since he had no idea where I went. I thought he knew where I went. I apologized to him in that I had forgotten exactly where we had been seated. I drove home after I dried myself off with a towel. Joe remarked how well I had driven home since it was pouring and had to see the road. Sweet of him to say that after I had lost him at the Braves fireworks.
Thursday the 7th we drove down to Orange Park, Florida to see Mike's family and our beloved granddaughters. Of course Max was with us since he is a great traveling dog and the girls love him too. The drive was enjoyable but we notice that in middle Georgia on Interstate 75 there was a lot of smoke that hindered the view and smelled nasty. The fires in south Georgia in the Okefenokee Swamp were causing the smoke to reach this area.
We arrived an hour ahead of schedule so we were able to drop Max off at Mike's home then head over to the Holiday Inn on Wells Road to check it. We were on the 6th floor and had a lovely good size room. Joe was able to rest for 30 minutes before we would head to the girl's swim meet at the Argyle Pool. Joe and I were surprise to see so many people there. I mean hundreds. Some smart parents had a tent with chairs to watch the meet. We looked around and could not see the girls, Mike or Jenn anywhere and thought I had the wrong pool. As I was calling Mike, here comes Samantha and Emily running up to us with big hugs and wide smiles. They had grown and Sam was really maturing into a young teenager. Sam had slimmed down and look great in her bathing suit. As we followed the girls to where they were sitting, Emily has Sam look at her head to make sure that Grandma did not leave any of her lipstick on her. There was Jennifer under a tent and in a chair with a friend whose daughter was also part of the meet. She graciously offered us a seat in the double lounge chair next to Jenn. It was raining and the meet was on hold since one of the judges had seen lightning in the distance and had to wait till there was no lightning for 30 minutes before the meet could start. The girls had some of their friends around them and it reminded me how young girls are so silly and giggly. It was a delight to see both girls race and Mike came just before Emily's first race. Wow, Emily really knows how to swim now with backstroke, breaststroke and freestyle. Last year she did not know any of that. No ribbons were won but they had a ball and best their previous run times which is their goal. Winners they are.
It was about 8;30 PM when we finally left the well organized swim meet to head over to Gators for dinner. It was so nice to sit down with all four of them for dinner. What a great evening and Joe made it through the whole event without having to leave one time.
Friday was our day with the girls since both Mom and Dad had to work. We picked up the girls at 9:30 AM and got a quick bite to eat somewhere but I forgot where. Our mission was to buy some school clothes for the girls. We drove over to Avenues Mall which is across the other side of the St John's River. Sam wanted to do her shopping at Forever21, a clothing department store that I never heard of. To our surprise the place was huge with two levels. We started to collect a wide range of styles, colors of skirts, blouses, jeans and dresses. I found a chair outside the dressing room to have Joe sit as Sam tried on clothes and I would run and get different sizes or find another outfit. After two hours, we were successful with Sam and she got four different outfits that were interchangeable which is loved and was so excited about her finds. Our next stop was to find Emily some clothes at Justice Just For Girls. Again between Emily, Sam and I we grabbed difference outfits for Em to try on. Em did not want me in the dressing room so she could model the outfits for me. Joe was seated comfortably outside the store on one of the benches. After about an hour Em had her new wardrobe and grinned from ear to ear. Fun times with the girls doing some shopping. Lunch was at Steak N Shake. The girls ordered a large M&M Milk Shake which the waitress forgot to get in a timely manner. The girls enjoyed those shakes along with their burgers. In the car Emily states I am tired and I am going to take a nap and asleep she goes. We thought we would all get a good rest at the hotel but Em got her energy back and decided that she loved jumping back and forth on each bed forever. I could tell Joe had enough and needed some rest so I took the girls outside to the pool area. We soaked our legs in the hot tub then I let the girls get in it with all their clothes on since they did not bring their swimsuits with them. They also swam in the big pool for about an hour. When they got upstairs, they took a shower and used everyone of the towels. They got dressed up in one of their new outfits
We got back to Jenn's townhouse about 5:45PM and we stayed until 6:30. The girls proudly showed their new outfits to their Mom.
Joe and I drove over to Judy Morales home about twenty minutes away to pick up her and her brother, Gilbert up for dinner at Beca Di Beppo. Judy and Gilbert are some of my classmates who graduated from Hauppauge High School in 1963. Judy greeted us with a hug and a Puerto Rican Rum and Eggnog Concoction. Gilbert came in a few minutes after we arrived. Gilbert did the driving over to the restaurant on the other side of the river located at Avenues Mall exactly where we had been earlier in the day. The restaurant had all kinds of nostalgic photos and artifacts from our era that we enjoyed looking at. Sophia Loren was even more gorgeous than I remembered. Strangely the hostess seated us at the same table where Joe and I ate with the family several years ago. We had a Caesar salad, calamari, lobster ravioli and lasagna which was shared family style. All the orders were small sizes and way enough for all four of us to share and enjoy. Joe and I always enjoy our time with Judy and Gilbert who are such warm and caring people. Judy wanted us to come back to her home afterwards but at 10:30 PM, I knew that Joe needed to get some rest. It was a long day for him and he held up pretty good.
The alarm went off at 6AM since we planned to see my niece, Jaclyn Garris, run the Triathlon in South Ponte Vedra Beach. The Triathlon consisted of a ocean swim, bicycling and running. She has made this a part of her training for the Nation's Triathlon in Washington, DC on 9/11/11. Jaclyn has raised over $10,000 for the Leukemia and Lymphoma Society (www.lls.org) in honor of Joe and her deceased maternal grandfather, William DeCaprio. Joe and I wanted to show our support and gratitude to her fantastic efforts. We had gotten to scrumptious ritzy Ponte Vedra about 8AM which Jaclyn told us to come where we could see her finish the bike part of the race then complete the run. Joe and I stood where the bikers jumped off their bikes and start the run. After seeing so many guys and gals of all ages pass us, I was wondering if I would recognize Jaclyn since so many people looked the same in the racing outfits or maybe she had already finishing the biking. About 15 minutes went by, I heard "Aunt Bonnie!". There was Jaclyn looking like a racing pro getting ready to dismount her bike. She had a huge smile and I got her photo! Joe and I moved over to the Montoya Finish Line where the runners came to take off their timer and give it to the officials at the table. I suppose it was 30 minutes when Jaclyn finished the running part of the race. She was pleased with her time and was able to finish the triathlon for the first time. The first one she competed in, her bike had a flat tire and learned an important lesson which she is now prepared for future races. We treated Jaclyn to a hardy breakfast at Elizabeth's in Ponte Vedra which was a nice casual restaurant and very popular. We ate outside and enjoyed our time together. We did drive over to her apartment located in Jacksonville Beach so we could meet her puppy, Memphis. Memphis is an adopted schnauzer and poodle mix with high energy and so very friendly. Quick good-byes since we had to be in Orange Park at 11AM.
We arrived at North Florida Gymnastics about 11:15AM where Emily was participating in learning gymnastics. Her Daddy Mike was there since Mommy Jennifer and Sam were shopping and decorating the townhouse for Emily's 7th birthday party. There was Emily flipping, balancing and jumping in the huge gym with wall to wall gym mats. Emily knew that we were there to watch her do her thing which kids love to have. Just being there meant so much to her and to us. After the event, Joe and I headed to the hotel to get a little rest before the birthday party started at 2:30PM.
We arrive at Jennifer's townhome which was filled with Emily's six guests and Deanna, one of Jennifer's friends. The house was decorated with balloons and streamers necessary for a party. The girls were already playing with the two video set ups with WII on one and 360 on the other. It was an Olympic Video Game Party. The girls had so much fun and were so well behaved. Emily was in heaven having her dear friends at her home all at the same time. She could not have been any happier. Jenn cooked pizza for the guests and some pasta since Em does not like pizza. Cupcakes were the dessert and birthday cake and enjoyed by all. Emily loved all her gifts as well as the three Sony DS games we got her. Since Joe and I would not be at Sam's birthday party the following weekend, she got to open her large gift after Emily opened all of hers. The size of Samantha's eyes and the expression on her face was priceless when she got her birthday wish of a new Ibanez Acoustical Guitar, bag, tuner and pick. It was so shiny and sounded perfect for her to take her guitar lessons that her other Grandmother and Grandpa got her for her birthday. Joe left after the gift opening since he had all he could take. I stayed for a few more hours to enjoy watching the kids interact with other kids. Mike, Jenn, Deanna and I played a bowling game on the Winbox 360. What fun that was and boy we all paid the price for it with sore muscles the next few days. I got such a kick out of watching the girls play "makeup" in the bathroom which was one of the birthday gifts that Emily adored. There was Em trying to put eye shadow on one of her friends as the others looked on. Em told the girl she needed to put her eyelids down. The girl held her eyelids down with her fingers as Emily tenderly smeared some eyeshadow on her lids. Precious memory for sure for me.
Joe came by and picked me up about 10PM to head back to the hotel for a good night's rest. The girls had all their sleeping bags all over the living room floor and were all set to watch movies. It was a good time to leave.
On Sunday we drove over to Jenn's to say our goodbyes and I love yous. Joe and I were so thankful to be able to be there for the weekend. We enjoyed it so much. We were back on the road after picking up Max at Mike's home at 12:30PM and we got home about 6:30PM. I was starting not to feel so good in the tummy like it was filled too much. At 8PM we went over to Outback for dinner and I did not feel like eating and I started to have to go the restroom often but I still had control. By the time I got home, I had to run to the bathroom way too often. I took tums to settle my stomach that was churning and some immodium to stop the runs . I could not sleep cause of my issues. At about 2AM I tried to lay down in bed when I started to have some really awful acid reflux and my stomach was churning even more. I took some more tums and immodium but ugh it did not work. I was on the potty when I started to sweat like Niagara Falls and getting like I was going to pass out. So, I had to lay on the floor. The worse started to happen when I was started to throw up and come out the other end at the same time. I laid on the floor drenched in sweat until I felt there was no more to give. I got out of my nightwear and washed them in the sink, redressed and fell fast asleep. I slept till 3PM the next day and then took it real slow and kept drinking liquids. I did not want to take a chance on putting any solids in my stomach. It was yogurt and cottage cheese for the next two days before I came back to normal.
The bad part was that on Tuesday, we were flying to Houston to see Joe's doctors. I prayed that the virus would only be 24 hours. The bad part was but early Tuesday morning I felt like I had been run over by a truck since every muscle in my body aches and my stomach was still churning a little bit. I started taking Maalox anytime my stomach started rolling which helped that part. Our plane left at 7AM to Houston. The day was filled with appointments. At the airport I picked up our rental car and we were on time for the first appointment at 9:15 which was vital signs and a blood draw. We met with Dr Torres in the Infectious Disease Department who came into the exam room stating that he had good news for us. Joe could stop taking the antibiotics since his infection has cleared up and all tests showed no more pneumonia and his chest no longer was wheezing. I was hoping that with the removal of the antibiotics that Joe's intermittent diarrhea would stop which only time would tell. As requested, Dr Torres paged Dr. Romaguera since Tuesday was not his clinic day so he could not meet us over in the Lymphoma department or it would stir up the staff. Tuesday was his meeting and research/teaching day so he would try to see Joe when he saw Dr. Torres. Dr Romaguera came into the room with his usual soft smile and a hug for him and a shake for Joe. He was concerned with Joe's platelet count which was again 79 as it was two weeks ago at Emory. He checked for any swollen lymph nodes and there were none. He checking his spleen which was now down to 13.7 cm. Yeah , it decreased another centimeter. Romaguera was satisfied that Joe was still in remission and in good shape and he would see him in September. He also told us that Joe's White Blood Count was down to 4.3 which is in the normal range. Great news since it has been high! Not only that, 55% of the white blood count were the germ fighting neutrophils.
The most important appointment was with Dr. Verstovsek in the Leukemia Department which was not till 3PM. Dr V was Joe's Myelofibrosis doctor at M D Anderson Cancer Center before Joe got diagnosed with Mantle Cell Lymphoma. Joe had been part of the INCYTE trial drug from 9/12/2008 till September 2011 when he had to come off the INCYTE to be able to receive chemotherapy for the new cancer. Joe was so worried at that time this past September about coming off the INCYTE since it improved the symptoms of the Myelofibrosis such as the drenching night sweats, extreme fatigue, weight loss, muscle lost and lack of stamina. Dr V was not sure if he would be allowed on it. I even spoke to the drug company about it and they would see about it when the time comes. So, when we were out there, we were not sure if Joe would be allowed to go back on the trial drug. Catherine Lewis, Dr V's clinical nurse, had Joe sign a disclosure package which listed some of the ill effects which now listed lymphoma in less than 3% of the patients. Dr V stated that he did not have another patient in the trial that had gotten lymphoma but Dr Teferri had one but he did not know which type of lymphoma. It was good to see the tall, gray headed, good looking smiling doctor. He said that he and the drug company decided that they would treat Joe as if he had been on a hiatus from the INCYTE thus he would start where he had left off with 15 mg of the drug twice a day. He was very confident that it would shrink Joe's spleen even more and tackle his other symptoms such as the hourly dripping sweats on head and his stamina as well as the fatigue. It would also help him gain weight. I asked lots of questions and felt comfortable with the decision to go back on INCYTE. Joe was very happy indeed. Time will tell if it works and there are many people praying that it does including us. Next stop was the 10th floor pharmacy at 4:30. They had told us that it would be an hour before it was ready and we requested a rush since we had to catch a plane at Hobby at 7:20 in the middle of Houston's infamous rush hour traffic. They said they would do there best. I got on my iphone where I found out that the plane was delayed by an hour which for a change was good news for us since we did not have to be under great stress to get to the airport and we would have time to have a leisurely dinner if we get the drug in a decent time. We did and by 5:30 we were heading to the airport and were able to fill the gas tank up with .7 gallons, drop the car off, get through security and to the gate by 6:40PM. All the airport screens showed the plane leaving on time so we had to go to the gate to find out what was happening. The gate was at the end of the concourse of course and the attendant indeed told up that the plane was delayed an hour. Yeah, we headed to the middle of the airport where all the food is and we decided to eat at Pappadeaux since I still needed to eat very carefully. I was dragging myself all day by the time I got to the airport, I felt like I could give no more. Joe would walk way in front of me for a change while I slowly took tiny steps. I felt that I was in slow motion. At Pappadeux I had an outstanding Lobster Bisque that I will remember forever with real chunks and pieces of fresh tasty lobster floating on top and in the bisque with just the perfect amount of spices. I had a bland shrimp cocktail that I barely could finish eating. I could not drink my wine. Joe had some fantastic looking oysters rockafeller, salad and even a dessert. The good news from the day had generated an appetite. Yeah for Joe! We landed in Atlanta at 11:30 PM and Joe drove home at my request. It was so good to be home. It was great to have a day filled of good news. God has answered our many prayers.
Joe's blood counts on 7/12/11 were as follows with the normal ranges and actual amount.
WBC (4-11) 4.30
RBC (4.5-6) 5.50
HGB (14-18) 15.70
HCT (40-54) 50.70
PLT (140-440) 79.0
ANC (1.7-8.3) 2.36
Oh my, the date is now 7/23 and I just can't get motivated to update the blog.
Joe's cough is substantially better. It has lasted so such a long time so I hope that it is really going away. Joe's spleen decreased substantially after only six days of taking the INCYTE. One nice aspect of the smaller spleen is that Joe can now lay on his left side while in bed. It means that he can snuggle up to me which I treasure thus helping me to sleep better and feel more loved His appetite is finally back to normal so I hope that he gains some weight to his frail frame. Joe's hair growth is now visible rather than just fuzz. One of Joe's favorite perks is when I shave his face with his electric razor which he finds so relaxing. Yes, I have spoiled him! His stamina is somewhat improved but no where it needs to be.
Every two weeks Joe will get a blood test done at Winship at Emory. The final report will be faxed ot e-mailed to Dr. Verstosvek and Dr. Romaguera at M D Anderson who will still be directing his care. Our next blood test is Monday morning, July 25.
I have booked in August a seven day Breezes Grand Negril Resort and Spa located on Negril Beach in Jamaica. It is about an hour and twenty minute bus ride from Montego Bay Airport to the resort. It is an All Inclusive resort which I felt was good for Joe since we would not be running away. He is looking forward to it tremendously since it is his desire to be able to travel again. Since he is feeling decent, I thought I better fine something sooner rather than later. At this time it would be hard to book any trip way ahead of time.