3/21/11 Silver Lining Showed Up Today!

Sunday night Joe and I had a dinner date at 7 with Alan and Laura Caruthers of Waco, Texas at MI LUNA, a tapas restaurant located at the trendy Rice Village on University. Joe and I arrived there promptly at 7 and Alan and Laura were already there. How amazing it is that we knew who each other was in spite of never meeting in person. I met Alan on MPD ACOR chat support list in September 2008 when Joe was being accepted for the INCYTE trial under Dr V in the Leukemia Department for Myelofibrosis. Alan was one of the first on the trial and was giving it great reviews in that it gave him his life back. At that time Alan was in his early 40's with a wife and newly adopted baby. Unfortunately for Alan his success on INCYTE only lasted a very short one year. He has tried so many protocols and trials then he has made the difficult decision of getting an allo stem cell transplant. He was checking in at MDACC this week for major surgery in the removal of his massive boulder 37 cm spleen. The operation is Tuesday and he will be an in patient for a week. Please add Alan and Laura to your prayer list. All four of us enjoyed our Spanish like meals as well as several hours of lively conversation. God be with you Alan and Laura. There are many who are praying for you and many are people you do not even know.

Joe's appetite has returned and each day it is more hardier. Enticing him with hot fudge sundaes, thick strawberry or chocolate milkshakes, scoops of ice cream twice a day has paid off. He is eating real food now. I am now sure that the "loss of appetite" was caused by one of the antibiotics which he stopped last Thursday. After all this is over, I may become a medical expert (LOL). Today Joe weighed 166.1 lbs. He gained weight and I smiled from ear to ear and gave him a High Five!

The alarm clock roared at 6AM. Good Grief! I was sound asleep and heck it was still dark. I hate early appointments. No stops for breakfast since Joe was not allowed to eat prior to the CT Scan of his chest. It was so early that I was able to beat the traffic and park on Level 2 of Parking Deck 2 which never happened before. Joe and I walked hand in hand across the street to the Outpatient Radiology at 1700 Holcomb. We walked in exactly at 6:50 AM which was our appointment time so why do they call Joe back 40 minutes later at 7:30 AM? It is a regular occurrance in the CT area as well as the Ambulatory Clinic for delays. This particular location for CT Scans is my least favorite since the chairs are uncomfortable which one must wait in. There is no TV. There are no Coke machines to feed my addiction. There are no snacks. Thankfully this time Joe was finished with the CT Scan at 8:10 AM. There was no dreaded Barium cocktails nor enemas which made Joe enjoy the start of the day much better. We walked back over to MDACC Main building and walked through the front area of fountains and colorful, manicured, designed gardens. Joe and I were both hungry so we went to the first floor cafeteria. Joe ate a full American egg breakfast while I had my usual bagel. The toasters in the cafeteria area are real losers. My bagel was in the industrial toaster at the highest level for toasting for 0ver 10 minutes and all it did was warm the bagel. Ugh.

We headed up to the B Elevator to get up to 6th floor of MDACC Lymphoma Department. As I signed Joe in, a bubbly high energy Holli Baker came running over. Joe headed to the Fast Track Blood Draw as Holli and I chatted. She brought me up to date on her status and what is happening next for her. Holli was called back into the exam rooms first. When she came out, I had fallen asleep sitting up in an uncomfortable chair. Surprise! I could hardly talk. We wished each other the best and ended our good-byes with a Holli Bonnie hug. Joe and I were called back to the exam room for our turn. First Joe answered the 100 questions the PA asked. Goley, our normal PA, was not there since she was getting an operation on her collarbone that she broke two weeks ago in an automobile accident with one of those Monster Trucks that Texans drive around here like MANIACS!

Dr Romaguera walks in with his usual smile and gives us both a handshake. He discusses how Dr Torres from Infectious Disease and he conferred about Joe's diagnosis of Fungal Pneumonia. Dr R said that they agreed that Joe should not do any chemo until the Fungal Pneumonia was gone. Dr R thought it might be a good idea for Joe to do Rituxan maintenance this week and again in 2 months but Torres also said not to do it so that means we are cold turkey for a couple of months. Dr R still believes Joe is in Complete Remissions since every test and lab work showed no Lymphoma but did show the other incurable disease of the bone marrow called Myelofibrosis. The Bone Marrow Biopsy showed more scarring of the marrow and has been decided by Dr V and Dr R to be the cause of Joe's low platelets which is a part of that disease. Dr R stated that he needed to have the case worker/patient advocate assist him in getting approval of Home Care so I could give Joe the IV's of ERAXIS, the antifungal power medicine. Joe has been getting IV's each day since Friday of the ERAXIS at MDACC which take about three hours. He will continue to get it at MDACC until they can get the health insurance company to approve it. Since our next follow up appointment at MDACC is not until April 27, Dr Romaguera gave his blessing of us being able to go home to Atlanta IF Joe can get his blood tested weekly, examined by a doctor once a week while he is on ERAXIS and if they can get the HOME CARE approved for the ERAXIS. Joe was smiling and told Romaguera that he appreciated him giving his blessing for us to go back home to Atlanta for a month. A POWERFUL DAY! Romaguera told us that Joe's blood counts continue to improve and that his platelets increased to 68 from 48 last week. YEAH!

After leaving Romaguera exam room, we headed to the Water's Edge Waterfall that is located behind MDACC. It is HUGE and at the top of the blog is a picture of Joe in front of HALF the fountain. What a great place to escape from treatment to meditate and gain some peace! Next to the massive waterfall is a terrific new Food Court with lots of varied food choices. This is the place to eat lunch. Hangs down fellow MDACC family! My thanks to Holli Baker telling Joe and me about this place.

Our next appointment was at 1PM to get the ERAXIS IV on the 10th floor Ambulatory department. We were called back at 1:40 PM, It was here that we found out that Joe's weight was 166.1 lbs. He had GAINED weight! MORE GREAT NEWS!. As Joe got his IV we shut the lights down in the room so we could both take naps. He laid one direction on the bed and I laid the opposite direction. He rubbed my toes. We tried to sleep but the IV PUMP Alarm keep going off stating there was air in the line. Each time we would have to call the nurse to fix it. The alarm went off three times. On top of it all, the room was COLD thus that also prevented us from getting some sleep. Oh well!

Joe's Blood Results was also a HAPPY event today since they continue to improve or remain stable.
NORMAL RANGE

WBC	4.0	11.0
RBC	4.5	6.0
HGB	14.0	18.0
HCT	40.0	54.0
Platelets	140.0	440.0

...............................TODAY................. 3/14/11........................... 3/8/11
WBC ----------------(8.1)......................( 33.7)..............................( 62.7)
RBC........................( 4.27)....................( 4.34 )............................(3.85 )
HGB........................( 12.9 )...................(12.9 )..............................(11.6)
HCT.........................( 41.2)...................( 40.5 ).............................(35.9)
PLT ..........................( 68).....................( 48 )................................(62 )

Joe and I are free until 6PM tomorrow night when he is scheduled for his next IV of ERAXIS which means we will get out of MDACC about 9PM BUT at least we can sleep late tomorrow. We are both beat. We are running on adrenalin today because we had some SILVER LINING come into our lives. Those who believe, know why. There is POWER in those prayers.

Stay tuned and maybe I will be able to report that we are on the road to Atlanta. God willing!

Ciao! Sleep well my family and friends!