Thursday, February 24, 2011

2/24/11 Pumped Up with More MEDS

On Wednesday we were heading to MDACC for Joe's appointment with Dr. Torres, the Infectious Disease expert. As usual I was handling too much stuff. I was putting some items in the back seat of my car to head to MDACC when a piece of paper fell and as I went to grab it, BANG, the car door smashed my right middle finger. OUCH! OUCH! OUCH! I ran around the parking lot in great pain trying to get my mind off of it since I knew if I stood still that I would be screaming. I was screaming in my mind. Poor Joe knew I was hurt but had no idea what to so except say, "Let's go to the ER." No way, we needed to get to MDACC and what they heck will ER do for the smash finger except say ice it, take tylenol etc.... Without even trying to cry, the tears rolled down my face. Joe took over the driving job since I was incapable of concentrating on anything else but the dang finger. I held my hand up in the air with the middle finger sticking up thus I am sure that I will not earn Citizen of the Day Award in Houston. What was that award back in the "old" days, The Fickled Finger Award or something like that.

Our first stop was Panera Bread where I had requested a cup of ice water. Bad idea! Who would have thought that would make it hurt WORSE! Yep, I did another quiet dance at Panera Bread till the excruciating pain stopped. Joe drove over to MDACC where the appointment was for 10:30 with Dr. Torres. No "Fellow" came in first to examine Joe, it was the one and only Dr. Torres, such a nice smart doctor. He told us that now they were going to pump medication into Joe to cover any type of infection since Joe was finished taking the various tests. He did not want to put Joe on any meds until the testing was done or else the meds would have covered up the infection. He added to Joe's menagerie of pills, three more. Minocycline HCL is a tetracycline antibiotic. CIPROfloxacin HCL is a fluoroquinlone antibiotic. VFEND is an azole antifungal drug. The hardest part with these three drugs is timing them with the others since they can not be taken with certain ones with 2 hours before or 6 hours afterwards. It appears to me to be an impossible task with Joe so I will have to constantly remind him when to take the pills even though they are in a pill organizer. Dr Torres says none of the tests are back yet but when Joe comes back in for a follow up next Tuesday we may have an answer as to what he has. Dr Torres told us that he is recommending to Dr Romaguera that chemotherapy be held off for two weeks till the medication takes hold. Chemo decreases Joe's immune system thus the already nasty infection could become fatal. OK, we had no problem going along with that since he is the expert even it is means that we will be here in Houston a bit longer.

We went back to Neurology department to get Joe's Antarctica baseball hat that he left there the other day. We dropped off the three prescriptions that Torres gave us at the 10th floor Pharmacy. I tried to have Joe's cough medicine transferred from Emory to MDACC but the Pharmacy Department said that they could not do that and that Joe's doctor would need to write another script. Phooey, I had asked Torres' nurse about that before we left that clinic and she did not think it would be an issue. Now it was 12:05PM thus we could not get s script written since it was lunchtime till 1:30PM. Joe was dragging so I decided that I would e-mail Goley and ask to pick up a script. I called her to follow up my e-mail and guess what? Goley was not in today! The substitute PA would see what she could do. She called me back several hours later to get the information on the drugs and that she would call it in to the 2nd floor pharmacy. She made a follow up call later and told us that she called it in and that we could pick up the two drugs that we needed. I would wait till Thursday to do that. Joe and I both crashed on the bed from all the running around at MDACC and it felt so good. Later Joe headed to the store to buy a protective cover for my finger. He bought home three different ones since he wanted to make sure I got the best one. Sweet! He also went out and bought dinner back for the both of us from Kenny and Ziggys. Ditto Sweet!

Today is Thursday, February 25, and after breakfast we drove over to MDACC where Joe ran into the building to pick up the drugs as I drove around the block several times so I would not have to park in the parking garage. The Parking Garage makes enough money off of us with $12 a day parking though it is pro rata for the time used. We buy a Smart Chip for $100 that gives us $115 in parking credits. I was still beat from the previous day thus I told Joe that when we got back to the studio apartment that I wanted to get more sleep. We both did and we did not get up till 2PM. We had lunch outside at Jimmy Johns Sandwich Shop not to far from where we are staying but Joe did not like the tuna salad sandwich. My Roast Beef was decent but not as good as the Brown Bad Deli.

The rest of the afternoon was devoted to me washing clothes and changing Joe's bandages. The kit I used today was from Emory which was quite different from MDACC so I had to punt in figuring how to use it. I will buy some new kits from MDACC since I am used to those.

We do not have another medical appointment till next Tuesday which is a huge break for us. I still want to stay close to Houston to keep the focus on Joe getting lots of rest. I also need to get my middle finger to stop hurting. On Saturday is the huge Houston Rodeo Parade that starts at 10AM. I am going to buy us some cheap lawn chairs to make us comfortable. Houston has the largest Rodeo in the country. It starts 3/1 and lasts till 3/21. It has been going on for 80 years and last year 2,100,000 people attended. Every single day that have one big name act put on a show at the Reliant Stadium. I suppose after they clean up the horse and cow presents. They promote it like crazy on the TV news stations and I must admit, it looks enticing. Holli Baker who lives southeast of Houston says that we must go. So, we will. It will be a brand new experience for Joe and me and I will share with you our experiences.

Good Night!

Monday, February 21, 2011

2/21/11 Busy Day at MDACC abd Birthday Report

Good Evening!

Sunday was Joe's 68th birthday which he said he was glad that he made it to this birthday since he had some doubts. I told him that I had no doubt and that he will also reach some more since that is what we are working towards. Joe was quite surprise by all the birthday greetings that people actually cared. Thank you all for making his birthday so special.

Sunday morning we went to the 11 AM church service at St Phillips Presbyterian Church on San Felipe St which is just around the corner from us. It was jammed packed with parishioners since they had an excellent female guest preacher, Dr. Fairfax from Highland Presbyterian Church in Lexington, Kentucky. She is giving four lectures this week which I am sure will be filled. The children's choir of about 20 did an outstanding job in singing two very lovely hymns that were very upbeat. Watching children performed is always touching to me and makes me smile. Rev. Bernie Nord gave the kids an enthusiastic sermon to the kids which kept their attention.

After church we headed over to Kenny and Ziggy's NY Deli on Post Oak Blvd to meet our Chinese friends, Yan and Hang, who are attending American Universities to obtain their advanced degrees. Yan is studying for a doctorate in Public Health where she can help her fellow countrymen in China. Yan is a very pretty and speaks English great. What a wonderful smile she has. Hang is studying for his Masters Degree in Business. Hang is a very motivated businessman and wants to have his own business. He loves learning how capitalism works and how to make a business successful. Hang has a perpetual smile on his face and is funny. He has a great sense of humor. They enjoyed the deli and the introduction of another type of restaurant and food in the USA. They have taught has much about China and we are way more alike than different. They are very family orientated where each generation helps the next generation financially. During spring break Yan and Hang will take their first Caribbean cruise with Royal Caribbean out of Miami. I can not wait to hear what they thought of it. They plan on seeing Alaska with their families and then Hawaii. They have visited so many places in the USA. during the college breaks.

Joe was very tired after attending church and lunch so I took him back to the studio apartment where he laid down. I had to drive over to Randall's Supermarket to get Joe some Orange and Cranberry Juice. Joe was sound asleep and eventually I also took a nice nap.

The birthday dinner reservations at The Capital Grille was at 7:15 PM only a few minutes away from where we are staying. It is located on Westheimer near the Galleria. What a pretty rich looking restaurant. They greeted us with a Happy Birthday to Joe and our table had birthday confetti on it. At my son's, Mike, suggestion I ordered the Bone In Sirloin and Joe and I shared the Lobster Mac N Cheese. As appetizers I had Lobster Bisque with chunks of Lobster. Joe enjoyed a perfect Caprese Salad. Since Joe can not drink alcohol during the chemo regimen, he had sweet Iced Tea. They do not serve and Sweet Tea in Houston thus one must add their own sweetners. Proof positive that Texas is not a Southern State. My sirloin was exactly as my son stated which was tender, juicy and lots of flavor. Joe had Steak Au Poivre which he ate half and Max had a feast with the other half along with the bone from my sirloin. The Lobster Mac N Cheese is one of those must try side items at the Capital Grille. It was cheesy with generous lumps of tender lobster with toasted bread crumbs on top. We have half of it left over and it is sitting in the refrigerator ready when the impulse hits. We were stuffed and bypassed dessert but Capital Grille served Joe a Creame Brulee but we could only just taste it. Before leaving our waitress took two photos of us and printed them for us which was given with the check. The service was fantastic. The ambiance was plush with the lighting and dark paneling. The check was big but I knew it would be since this was a special occasion place one celebrates the event. Joe loved it and was very pleased.

Monday was jammed packed with medical appointments, tests and procedures at MDACC which Dr Romaguera had set up so very quickly. Joe woke up over an hour early and was ready to go so he went to the car to wait for me. I had to put Max's kennel together and get all of Joe's drugs together to take with us. Joe drives me crazy when he does stuff like that since it stresses me out since I feel the need to rush to get everything done. His cough and congestion was worse this morning so it was good to see all the specialists who have anything to do with this area of medicine. We got to the Ear Nose Throat (ENT) clinic on the 10th floor near Elevator A at 9:00 for Joe's 10:15 appointment which meant a bunch of waiting. Joe could not eat because of the broncholopsy that was scheduled for 10:30. I called the Cardiopulmonary Department and told them we were still waiting to see the ENT doctor. The clerk told us since it was a procedure that we had to be there on time. I notified the ENT desk that we had to leave and that we would be back later that afternoon.

We got to the 6th floor near Elevator C to check in the Cardiopulmonary department right at 10:30 and we proceeded to wait till 11:30AM for Joe to be called back. A nurse came and got Joe to get his vital signs completed behind the door of the waiting room. After waiting 20 minutes, I called Joe and the set up nurse had grabbed him from the vital signs nurse to get Joe prepped for the tests. She told me where Joe was but I had no idea where to go and she had to come get me. It was not near where the reception desk told me it was. Joe was behind some curtains to change clothes. They took Joe for the procedure where they sedated him and 15 minutes later they wheeled him back into the set up area so they could watch him recover. It took more than normal time for Joe to recover since his oxygen level at 85 so they gave him oxygen. His blood pressure was also low at 95/50. After about 30-45 minutes Joe's oxygen level got up to 95 and his blood pressure to 118/59. The doctor came over to talk to us and stated that she saw no cancer in the lungs but did see a nasty infection with very thick mucus in both lobes. She sucked out the mucus and sent a culture to the lab to see what germ in causing Joe's distress. Before we left the nurse instructed Joe not to eat until 2:30 PM and we left that area about 1;00PM.

We headed back up to the 1oth floor to the ENT department hoping that the doctor could see us before we had to go to the next appointment. Joe was finally examined by the "fellow" at about 1:45PM and then Dr. Ann Gillenwater came in. They put a lighted scope up Joe's nose into the sinus. Surprisingly, she saw no infection in the sinuses thus Joe did not have sinusitis. She believes Joe has rhinitis and would send her report to Romaguera. The Doctor saw the growth on Joe's upper lip and we discussed Joe's basal and squamous cell cancer history with Mohr's surgery. She offered to have it taken off and have the tissue sent to pathology so it was taken care of without much of a fuss. We had been hoping to see someone about Joe's growths on his face so this was a bonus blessing.

Next stop was the Neurology Department on the 7th floor near Elevator B where we saw Dr Morris Groves whom we saw several months ago when Joe was in MDACC getting chemotherapy. They gave Joe a very thorough exam. I gave the updated information on Joe's seizure on 1/20 and that we were told it was because of low phosphorus. He agreed that low electrolytes could trigger a seizure but it is usually low magnesium that will cause that to happen. He told Joe to stay on the 1000 mg of Keppa twice a day. We walked out with new prescriptions so I can get the drug via Caremark mail order which will supply a 90 day supply. He also gave me a prescription for a 60 day supply for the time we are in Texas.

We were finally done and Joe was completely exhausted. I wanted him to use a wheelchair but he was too proud to use it. Yes, he can be stubborn. He was dragging and walking took so much effort. Both of us were starving since we had not eaten all day so we stopped by Brown Bag Deli at Rice Village off of Kirby Drive to get one of their tender raw tasty roast beef sandwich. Joe was so tired that he did not have the strength to eat all of it and finished maybe a half of it. He was giving me the eye to finish so he would get home. So I shoved it down and was not happy about it but kept it to myself. I stopped at the drugstore to pick up some ice bags for my shoulder and knee which was on our way home. We walked into the studio apartment at 5:00 PM which was such a long day. Joe laid on the couch with his feet up. I worked on trying to get Max's crate moved into the corner which turned out to be a sweaty ordeal. I really needed someone to help me but Joe was not able to do anything. Finally after accomplishing that goal, I crashed into the bed with Max laying next to me. About 6:45 PM Joe woke me up with his groaning since Max had crapped on the floor big time. I had forgotten to take Max out when we got back from the hospital since I was so tired. I cleaned it up the best I could with Windex and took the waste to the garbage room down the hall. Joe goes crazy with bad smells so I knew that I had to act fast. I told Joe that I was heading to Randall's to buy some cleaning supplies. When I got back to the room, Joe was gone, the windows wide open, the coffee table and chairs moved. I know he left the room to get away from the smells. I lighted a glade candle that had a nice smell to it. I got on my hands and knees to scrub the spots and smell. I then sprayed some disinfectant spray everywhere. By the time Joe came back to the room, the foul odor was gone.

About 9PM Joe decided he was hungry so I ordered a medium pizza to be delivered from Barry's Pizza. Well, Joe only ate one piece. Geez, he is running me ragged as a caregiver but somehow I maintained my sanity and patience. Joe went to bed and here I am at 11:20PM CST updating the blog.

Tuesday's agenda is REST for Joe to get some strength and stamina back. We will keep activities to a minimum but I know Joe will get antsy and want to do something. We shall see.

Thank you for those who made comments made on the blog. It gives me pleasure that people would even want to read it.

Yes, Randy, Joe and I would love to meet with you when you come to MDACC in March. In fact anyone who reads this blog, who comes to MDACC, we would love to meet you.

OKAY, I am now sleepy and I hope Joe allows me to sleep late but he has a very hard time doing that. He wants me to go with him everywhere.


Saturday, February 19, 2011


MDACC keeps us impressing both Joe and me. Dr. Romaguera called us at 9AM on Friday and told us that he expedited the Infectious Disease Appointment from Monday to Friday at 2PM with Dr. Torres. He had also consulted with Dr. V, MDACC Myelofibrosis expert, who agreed with Romaguera the enlarged spleen is probably from the neupogin shots that facilitate the growth of White Blood Cells after chemo has knocked them down to almost zero. Joe's last shot of neupogin was over a week ago. They both feel that the spleen will decrease in size in a week or two so it is a wait and see. Dr R told us to page him after the visit with Dr Torres so he could come over to the clinic and measure Joe's spleen.

We walked into the Internal Medicine Clinic on the 6th floor near Elevator A right at 2PM. We were ushered to an exam room right away and an RN took Joe's vitals and asked Joe a hundred questions. Joe's blood pressure is staying excellent at 120/61 and he had no fever. Dr. Torres walked into the exam room with a hardy handshake and a nice friendly smile. He had a cane to assist him walking but he was only in his late 40's. You could tell he was very smart and we trusted his opinion. He examined Joe very thoroughly and reviewed the CT and X-Rays and agreed that there was an inflammation and spot on Joe's lungs in the upper lobe which needs to be investigated. He ruled out a fungal infection since one would be very sick with it and he said Joe looked pretty good. He left the room and called Dr. Romaguera to discuss what tests should be done so they could coordinate it. Dr Torres had a nose culture done and additional blood tests. Both doctors agreed that they needed to get into the lungs to examine the infection so it can be treated properly. They would set it up and let us know. They also want Joe to be examined on Monday by an ENT specialist and they would set that up also. Dr Torres stated that he would see us again on Tuesday and they would set that up also.

We headed down to the 2nd floor to the Diagnostic Clinic where the blood was drawn. Joe also handed the lab person the nose culture to be reviewed by the labs. As Joe was getting his blood, Goley called Joe and told him that on Monday morning he would see Dr Gillenwater, ENT specialist on the 10th floor near Elevator A at 10:15 to be examined. At 10:30 Joe would then go to the Cardiopulmonary Center on the 6th floor near Elevator C to be prepped for the bronch/lavage where they will sedate Joe and stick a tube down his throat to get to the areas in the lungs for samples. The prep takes about 30 minutes then at 11AM Joe has the procedure which takes about an hour. They will observe him till he comes back to normal. At 2Pm Joe goes to see the neurologist for further follow up on his seizure syndrome and to discuss the small non malignant growth at the base of his brain on the outside perimeter which Joe has had for over 20 years. Finally the day will be done. I am sure Joe will be quite exhausted so we will head back to the hotel so he can rest.

We stopped by the Lymphoma Clinic to have Romaguera paged since he was over in the hospital. He wanted to come over to the clinic to measure Joe's spleen which was 18 cm. It does not seem so bad to us since Joe's spleen has been as large as 30 cm. I guess the concern is how the spleen has grown into the groin area and more inwards. Thankfully Joe has no pain like some other patients complain about.

Saturday was a day off from medical tests and exams so we slept late then headed over to Panera Bread to have our usual light breakfast. I had my sesame bagel and Joe had the four cheese souffle that he just loves along with a large orange juice and small coffee. We headed back to the hotel where Joe ran up to the 3rd floor to change into shorts since the temperatures were in the mid 70's already and also to get Max. I drove over to Memorial Park which is only five minutes away which is well used by the locals with running, walking and biking. There are many walking paths and today we took the purple trail into the woods where the birds were singing their songs. We walked for a total of 40 minutes since I need to watch Joe from doing too much where he would be wiped out. Joe just loved being in the fresh air and walking since he had been looking forward to that for a long time. Max also enjoyed the walk and followed Joe and led Joe. After the walk, Joe wanted to get a foot massage so we headed back over to the Galleria area. He walked into one of the La Di Da places and they claimed they were too busy to fit him in. I drove to the other side of Westheimer near Fountain View Dr where I remember seeing a sign for massages at a reasonable price and it was a nice shopping center. The name of the place was Tulip Spa and they fit Joe in for an hour where he immensely enjoyed the massage on his lower legs and feet. The place was clean and busy. It only cost him $45. What a deal! As he was getting his foot massage, I headed back to the hotel, to drop Max off and catch up on my e-mails. I got back over to the spa to pick up Joe at 1PM and we decided to eat at the Mexican Restaurant next door called Los Cucos. The place was huge and very clean as well as colorful with nice waiters. The food was exceptionally good and we could not finished our dishes. We saw some unusual dishes passed us which was a large square iron sizzling skillet that was placed on a burner on the top of the table. It was filled of all kinds of grilled items and smelled terrific.

We headed back to the hotel and took a wonderful 3 hour afternoon nap. Afterwards I gave Max a good brushing since he is shredding lumps of fur. He loved it. The amount of fur that came off of him was tremendous. We may have to get him a haircut since there are lumps of fur all over the floor.

We had dinner reservations at Benji's in Rice Village. It was an action packed place with most people in their 20's and 30's with lots of talking and laughing. Joe had soup and a Caesar salad and I had a humongous pecan crusted double chicken breast with some of the best tasting veggies that I have ever had, It was a yummy dish. Max also like it since he feasted on the half of the chicken that I could not eat and the potatoes. The tab was reasonable for the quality. I would definitely order that dish again.

Now we are back at the studio apartment watching Saturday Night Live and relaxing. It was a great Saturday where Joe enjoyed the day so very much which gives me pleasure. Tomorrow is Joe's 68th birthday where we will attend St Phillips Presbyterian Church at 11AM. We will meet our friends from China, Yan and Hang for lunch at 12:30 at Kenny and Ziggy's. They will love it that I am sure. Sunday evening I have made reservations for the Capital Grille on Westheimer next to the Galleria for Joe's birthday dinner. He will love it.

I hope that your Saturday was wonderful also. May your Sunday also be a day to enjoy all the blessings God has bestowed on all off us. May the skies be blue, the temperatures warm with the birds singing their songs.

Thank you Lord for MDACC.


Thursday, February 17, 2011

2/17/11 What did Dr. Romaguera say?

We got over to MDACC Lymphoma department early to meet with Holli Baker and her husband. Holli was her ever cheery self and ready to tackle whatever cards God deals her. She looked cute in her hat covering her lack of hair. She is no longer teaching Art because of the danger of catching the dreaded germs of 1st and 2nd graders. You can tell that Holli is still enjoying her life to the fullest with the zest of personality that oozes out of her body. Hollie was in remission for a year and a half when the Mantle Cell Lymphoma showed its ugly head again. Dr. Romaguera has recommended an Allo Stem Cell Transplant which are stem cells from another person. She has under gone three Part A's of the HyperCVAD with one more to go. The key is for MDACC to find a stem cell match but so far there has not been one which is nerve wracking. Holli is taking it with much hope and courage that she will survive one way or the other. Once they find a match, she will undergo consolidated chemotherapy which destroys the bone marrow and immune system to zero. It is done for a week in the hospital. It is followed by a month's stay in the hospital being totally isolated as she receives the stem cells intravenously. Holli gave Joe and I a gift she made, a colorful cross with a special message to us on the other side. We will keep it near us to remind us that God is always with us during this journey of earth.

The nurse called us back into the exam rooms early at 4PM with our appointment being 4:30PM. We are so grateful to the amazing staff of MDACC. It was great to see Goley Richardson and we gave each other a big hug. We told her we were back till the job is finished at the Ritz of Cancer hospitals. Joe weighed 183 today which was good and his blood pressure was perfect.

Dr. Romageura greeted me with a hug and a handshake for Joe. He stated that he was very pleased with the results of Joe's chemotherapy. He said that Joe did better than younger patients who had no other serious disease like Joe has with Myelofibrosis. He stated there was no mantle cell lymphoma in the blood. He went over the CT radiologists comments where he did not see any lymphoma in the lymph nodes. The radiologists did see that Joe's sinus infection is worse and has spread so we are glad to know that we are seeing an expert on Monday in the ENT and Infectious disease department. It will be a great help to the ENT to have the blood tests and the CT results. A big negative on the CT scan showed that Joe's spleen substantially increased since the last CT exam in December. Dr R showed us the current and December CT exam and we could see where the spleen is now dropping into the groin area. Dr. R thinks the large spleen is from the Myelofibrosis because of the positive results of the blood and CT scan that the lymphoma was gone. The spleen would not normally harvest lymphoma cells but Joe could be an exception. Dr R wanted to confer with Dr Verstosvek about the spleen and if he also believes that it is from the Myelofibrosis. Dr R promised to call us tomorrow about his decision on additional tests and what Dr. V stated. Myelofibrosis is scarring of the bone marrow which results it can not produce enough healthy blood cells. In Myelofibrosis the spleen takes over the job in producing blood cells. The danger is if Joe spleen gets so big that it could rupture and cause death. I pray that they find a way to decrease his spleen size.

We left MDACC today with mixed feelings. Shouldn't we be joyful about what was said that Dr R thought the Mantle Cell Lymphoma is in remission? Both Joe and I feel that some other demon is in his body causing new issues. We will have to wait till more tests are done and find out what the results are then Dr R will tell us what he recommends next.

Both Joe and I are happy that he is being treated at MDACC. It is the right place for Joe and it is the right place for me.

Good night!

Wednesday, February 16, 2011

2/16/11 Destination Reached

Packing the car for a six week stay in Houston was a real challenge especially with it being part winter and part springtime. We each had a suitcase, a dog crate (dismantled), file box, 2 toolboxes filled with drugs (legal), a cooler of drinks, a pillow, 2 jackets, a HP printer, doggie bowls, pooper scooper, and goodness knows what else. Yes, the car and trunk was filled to the gills and there still was a spot for Max to lie down on his bed in the back seat. We left Atlanta about 11:00. It was a smooth 412 mile drive to Biloxi, Mississippi where our first day ended. It was Valentine's Day and on our way to Biloxi I asked Joe for a very simple Valentine's gift. It was a request for a 10 second kiss which he promised to do. Joe wanted seafood since we were so close to the Gulf of Mexico. My fingers got onto the laptop and explored several web sites. I settled on GT Gulfside Seafood on the shoreline of Biloxi. There was one table left if we got there in 10 minutes and we made it. Right across the street from the restaurant was Beau Rivage High Rise Hotel and Casino which was quite enticing but we skipped it. The Seafood Gumbo was sensational with just the right amount of spiciness. I had the Fried Jumbo Shrimp which were lightly breaded, tender, huge and so fresh. Joe had the seared Red Snapper in a tomato based broth that he loved. When we got back to the hotel he crashed. I did not get my 10 second kiss. Ouch! I also did not get it Tuesday or Wednesday. On Wednesday night, at the suggestion of my support group, I went to Joe and gave him the 10 second kiss where I got some Ummmmm..Mmmmmm.. Hey Max, she's a kisser. He flunked.

On Tuesday we started on the 422 mile drive to Houston at about 10:00AM after a light hotel breakfast. The states of Mississippi and Louisiana must have used all their Obama influx on more State Troopers.I can honestly say that I have never seen so many in action. We did not make any involuntary contributions to their state coffers. I loved driving over the really long bayou bridges and looking into the swamps. We stopped in Hamilton, Louisiana at Landry's for a relaxing sit down white table cloth table lunch.

We arrived at our home away from home, Homestead Studio Suites about 6PM. We got all our stuff out of the car and headed to dinner at Ninfa's for great Mexican food plus it was close to where we were staying. The decor of the place is very inviting and colorful. It was a great choice of restaurants after a long trip. We were both quite tired and hit the bed at 10PM which is unheard of for me.

The alarm clock beeped at 7:15 AM. Joe took Max out while I was finishing up. Max still is freaking out with the noises of the city. I hope he settles down soon. He loves the studio apartment since we are always in his view. Panera Bread around the corner was our stopped for some fresh sesame bagels. We got Joe to his first appointment at MD Anderson Cancer Center exactly on time at 8:45AM for various X-Rays. Our next appointment was at the Diagnostic Center where he got his blood drawn. We were finished by 9:45PM. Outstanding! MD Anderson has their act together in organization and being streamlined.

We walked over the pedestrian bridge over to the Rotary House where Joe was able to get a Starbuck's coffee which he adores. We went to the first floor into the comfortable living room area where it was not as cool as other locations plus the couches were comfortable. We headed back upstairs to have lunch at the Rotary House restaurant since Joe was craving their Fish and Chips. I had a delicious medium rare cheeseburger. We finished it by the deadline of Noon since Joe was not allowed to eat 3 hours before his CT exam with imaging. The first step of the CT exam is the prep that was scheduled for 1PM. We took the MDACC Shuttle Bus over to the Radiology and Imaging at 1700 Holcombe Bridge. It took a 20 minute drive to get their since the driver took the scenic route. If we had known, that it was at the adjacent corner to the Rotary House we could had walked it in less than 5 minutes.
We also got their on time and Joe briefly waited till they called him back but this time they kept him back there but only patients were allowed back there. He was back there till 4PM. I kept myself entertained on my iPhone then my laptop but if I had to do it all over again, I would have waited on the Rotary House lovely living room.

We got back to the studio at about 4:30 and Joe rested as I tried to get Max to do some business at the Dog Walk but he is still freaked out. Tomorrow we will take him to the Dog Park after breakfast. At 6PM we went around the block over to one of our favorite places the last time we were here, Kenny & Ziggy's Deli! We split the wonderful creamy chicken salad sandwich on rye with no celery in it and no fixings. It was as good as we remembered it. Joe ordered a huge slice of warm pecan pie and we ate all of its mixing of sweetness and flaky crust.

We missed the start of American Idol by a few minutes. The show really entertains us. We get such a kick of watching the antics of Steve Tyler. Jennifer Lopez looks like a model of sweetness. Randy is such a great guy.

Tomorrow we meet with Dr. Romaguera so we pray that all the tests are in. Joe keeps hoping the news is remission but he knows that is unrealistic. I already have butterflies in my stomach with the anticipation. God will give us the strength and courage to handle whatever is thrown at us.

Good night! Butterflies go away!

Sunday, February 13, 2011

2/13/11 Yellow Brick Road

Happy Valentine's Day to all! Here is Sunday and we have been so busy getting everything ready for us to hit the yellow brick road to Houston, Texas. Having not written this blog since Wednesday night has caused some concern with some of my friends so I will try to update what has happened.

Friday was our last visit to Winship at Emory to get his blood tested before we drive to Houston. Joe stayed continuously weak this time after Part B of the HyperCVAD-R chemo. It seems his blood chemistry is out of whack in the areas of magnesium, potassium and phosphorus. Dr. Winton believes that it is because his bone marrow is hard at work developing healthy cells. The amount of supplements Joe takes is like a bag of M & M's. Trying to balance all of it to prevent other side effects is a real challenge. The doubling of the magnesium oxide caused Joe diarrhea which made him miserable. I backed down the magnesium to the original level and added Imodium to the equations which solved that issue to about 75%.

We were delighted to find out the Joe's blood levels recovered enough that he did not need any transfusions on Friday. Our meeting with Dr. Winton and Jessica Neeley was very positive. Dr, Winton stated that he felt that Joe was already in remission but until MDACC does all their tests, we will not have a definitive answer. We also discussed stem cell transplant versus HyperCVAD-R with Rituzan maintenance every few months when the chemo is finished. Winton stated that comparing the two is interesting. They have found that the results of both are similar. He welcomed us to come back to Winship for the Rituxan maintenance after Joe finishes at MD Anderson Cancer Center. I shared hugs with Winton and Jessica while Joe gave a handshake.

Saturday was a very busy day with getting our roof and gutters cleaned, car serviced, picking up dry cleaning. We stopped at Home Depot to get some Weed and Feed for our lawn so hopefully it will stay healthy when we are gone. I use the spreader to spread it since Joe just not have the stamina to do anything like that. My car needed a new power steering hose and a flush kit. The shock came when I found out thathe bill was $736. There was no time to shop it around so we had Dekalb Tire fixed it. The hose had a small hole in it and it was dripping on the exhaust pipe. It was the smell that I had detected when I parked. I had check the oil but it was full and clean so when I had the oil changed, tired rotated, balance and the alignment check, I asked them to take a look at it since I did not want an issue on our drive to Houston.

We had lunch with Mike and Gail at Melton Bar and Tap in Decatur. Gail was recently diagnosed with Primary Myelofibrosis by a local hematologist. The doctor advised them to get several expert opinion and on his list he had; Dana Farber in Boston, Massachusetts; Mayo Clinic in Rochester, Minnesota; and MD Anderson Cancer Center in Houston, TX. Mike had contacted me since I am the MPD Support Coordinator for the Greater Atlanta area. We decided to meet so Joe and I could give them some support and hope. Joe still has Myelofibrosis (MF-3) along with the Mantle Cell Lymphoma. Mike and Gail are teachers and Saturday was Gail's 40th birthday. They had the wonderful charbroiled hamburgers at our suggestion and loved them. What a delightful young couple! Mike is the "Bonnie" of the family where he does all the research and contacts the doctors. Gail does not know much about the disease and wants to wait till they fly to Boston, Massachusetts to see the experts at Dana Farber. They were very impressed how they communicated with Mike frequently and answered his questions via e-mail within 15 minutes. That type of support with doctors will give one tremendous confidence. They will fly up there during spring break on 4/1. They are doing all the right things and I am confident that Gail will get the care she needs.

Eastminster Presbyterian had their annual special service of the "Kirkin' of the Tartans", with bagpipes and a special ceremony of Scottish heritage of so many of our members. I love when the families bring their tartans in on a poke up the aisle with the little children behind the parents or grandparents. They have the various plaids sashes, skirts, ties, bowties and ribbons that represent the various klans. The bagpipe and organ was such a glorious sound with the traditional Scottish Hymns. The church was filled with members and guests since it is quite a special service that is held annually, After the church service the members and guests are treated to shortbread and a beverage. If anyone would like to see this service some day, please let me know and I will notify you the next time that it is held. To hear "Amazing Grace" on the bagpipes and the church singing this great hymn always touched my heart as it does with nearly all of membership.

After church Joe and I head to Tucker to Advance Auto Parts to get my windshield wipers replaced. Joe had purchased the wipers but could not figure out how to install them. The sales clerk graciously came outside and showed Joe how to do it. I no longer have squeaky blades. We stopped for a pizza at Enzos which was so good. Joe headed home and I headed to Dunwoody to get an hour massage at Massage Envy on my neck, shoulder and arm. On the way home I stopped at Nail Service at Northlake to have a full set of Solar Nails, French style which I really needed,. Now they look great. I also had my eyebrows waxed. OUCH! Ah, it was not too bad, really.

When I got home, I started on organizing the paperwork for MDACC and Emory as well as setting up new files. I also had to gather my tax documents so I can complete our taxes while we are in Houston. I also need to do the final estate tax return on Joe's Mom estate. Afterwards we treated ourselves to dinner at Outback which Joe enjoyed so much. When we got home, we got to speak to Keith and his girlfriend via Face to Face on the iPhone which is really cool. Later we got to speak to our two granddaughters to wish them a Happy Valentines. They loved the gift from Joe and me.

In the morning, we will pack our clothes since we are both way too tired tonight. Packing the car will be a challenge and will take patience and get creativity. I got Max's crate broken down and already laying down flat in the trunk. Max is a fantastic traveler.

I will have to see how Joe feels in the morning. If he is still weak, I will take him to have his blood tested to make sure that his weakness is not from the lack of red blood cells.

Our plans are to drive about seven hours on Monday and spend the night in Biloxi at La Quinta Inn which was very clean, great beds, quiet and they allow pets. It is about 408 miles just about the halfway point to Houston. The weather forecast is clean and warm temperatures thus making it a great day to drive.


Wednesday, February 9, 2011

2/9/11 Rebuilding the Blood

Joe's nasty blood nose stopped finally at 2PM on Tuesday. It was great to see him wake up with a bounce rather than sloooooooow motion. Thankfully he agreed with me to take it very slow to let his blood counts recover.

We met Bryan and his parents, Rick and Vickie, for dinner at the Buckhead Diner. Bryan is only 32 years old. Piedmont Hospital diagnosed him this past Friday with Mantle Cell Lymphoma from a groin lymph node biopsy. His brother, Robby, who lives in Thomasville, Georgia found me via a search of mantle cell on the net thus finding my blog. I had spoken to Robby in length on Monday as Joe was getting his transfusions and made the request that I would talk and meet their parents who came into town from Charleston, South Carolina to be with Bryan as he got tests and consulted with the doctors at Winship at Emory. It is extremely unusual for a young man of 32 years old having his aggressive from of lymphoma. On Monday and Tuesday I spoke with Rick, Bryan's Dad, probably four different times until we were able to meet last evening at 6PM at the Buckhead Diner. Rick was full of questions as well as Vicky, his Mom. Bryan had some questions but his mind had shut down. He was not ready to discuss his disease. His parents wanted to know where Bryan should get treated. They wanted him to go to the top center, M D Anderson Cancer Center in Houston but Bryan wants to be treated at Emory where he is close to his network of close friends. Both Joe and I were as honest as we could be without trying to be grim. Bryan has a terrific chance of getting in complete remission since he is so young. I am skeptical at this time that Bryan has Mantle Cell Lymphoma. He is not sure whether a Lymphoma Panel and FISH test were completed. Tuesday he had a PET scan and had a Bone Marrow Biopsy under sedation (lucky guy). I mention to them about allogenic stem cell transplant as being very successful with patients under 60 years old. His parents are very intelligent and their is no doubt that they will explore all possible actions. I think Bryan agreed that he needed to get an expert second opinion and the best place to do that is MD Anderson Cancer Center. They were so appreciative of Joe and me meeting with them and being so open. It was enjoyable to be with them and a blessing to us. God somehow put us together. He works in amazing ways. It was wonderful for Joe to share also. They met with the Winship doctors today so I am not aware of the latest. Joe and I will pray for Bryan and his family. The first week finding out this diagnosis is devastating and incredibly stressful. I wanted them to walk away from us with HOPE since we truly have HOPE that Joe will get into remission. God bless them and walk with them on this dreaded journey.

Today, Wednesday, did not start as well. Joe started in sloooooow motion and stayed that way until he got gassed up with red blood cells. He could not even finish a meal today which has not been in the cards before. After having his blood drawn, they gave Joe a pager to alert one when they are ready to receive you for transfusions. The clerk assured us that it would work anywhere in the Winship building so we headed to the Patient Resource Center only one floor up from the Transfusion department, The Resource Center has nice couches and very comfortable reclining chairs. It is decorated with a little homey touch. About an hour relaxing in the center, one of the big male clerks came to get us that they were ready for us. Yep, the pager did not work which was a bad omen.

Our Infusion RN, Eunice, introduced herself to us and that she would be assisting Joe today. She had an island lilt to her voice and pronounced Joe's first name so sexy cute that one of the male nurse's laughed at how she said "Melvin." She grinned to ear to ear when I told her that I liked her voice and that had such a beautiful tone and was sexy which silenced the male nurse. She stated that the blood department was running behind and assured us that his blood was on its way. She verified Joe's name and date of birth. She said that Joe did not need platelets which was totally a shock but he would need 2 pints of red cells. I asked her for a copy of the blood test where she circled where the counts were low. It stated that his platelets was 77 which was hard to believe since only two days ago it was a minuscule 2. I looked at the top of the page and told her that it was not Joe's blood test and that it belonged to a Charles Evans. She could not believe it and grabbed the CBC out of my hands and saw that it really was not Joe's. She thanked me for catching that while Joe grinned proudly at me for the find. When we got Joe's real blood tests, his platelets were a still a low 13 and that he needed a pint of platelets along with the 2 units of red blood cells. I notified Jessica Neely, our PA, via e-mail of the CBC results and my alarm that Joe's blood pressure was extremely low at 91/53. No wonder he got dizzy when he stood up. No wonder he had no energy. I also asked her to get Joe's phosphorus level since it was not on the report. She e-mailed me back that she doubted that needed to be done since he was in the normal range on Monday but if I insisted, she would order it. I insisted and she ordered it. Well sure enough the phosphorus level was now below normal at 1.5 which was lower than the day he had the seizure and I took him to the ER. They doubled his phosphorus supplement and told him to start taking 2 monster pills four times a day. I read Joe the riot act since he would forget to take the mid day and early evening phosphorus supplement unless I handed to him. It is right on the counter with a huge note stating to remember to take it mid day and early evening. Jessica also read him the riot act and he had that bad little naughty boy look. BAM! Dr. Winton told Jessica to have Joe cease taking Benicar, his blood pressure medication until further notice and to come in to the clinic right away if he has any dizziness or any bleeding. Joe is scheduled to have another blood test and doctor consultation on Friday morning. If Joe's counts are not in the safety zone with his blood, we will postpone our travel to Houston which is easy to do since we are driving. Both Jessica and I feel that Joe will have good results on Friday based on history after Part B Chemo.

Joe is taking it easy tonight and watching TV in the Living Room, He spoke with his brother, Drew, who he enjoys talking to very much. I am so happy that they have become close because of Joe's life challenge along with the passing of their wonderful mother, Martha, last January 21, at the age of 88. I keep popping my head into the living room to make sure he is OK.

Thank you to so many people who commented on this blog site, via e-mails and on Facebook. Your kind thoughts and prayers are welcomed by Joe and me. You have made us strong as we fight this major battle. We will succeed. God is showing us the paths to take.

Good night my dear people. You are loved. God be with you and your families.


Monday, February 7, 2011

2/7/11 Crap Happens

Joe had a bloody nose all weekend and refused to go in to Emory to have his blood check. Going to Emory ER on the weekend is like a crap shoot game since there are so many people sick with the flu and all kinds of stuff that can kill Joe. Since I know that Joe was at his nadir point after the chemo, it would mean his white blood cells that fight infection would be low, very low. It is a situation that was very uncomfortable since at MDACC the ER is geared just for cancer patients. Our last experience at the Emory ER was not good with the dirty chemo pole and with them requesting Joe to move to a further away Emory facility that did not have a cancer center next to it. Joe was so incredibly weak this weekend that my heart ached with sorrow watching him trying to get off the couch or walk. I did call the Emory doctor on call who seemed unconcerned and told me to try an Afrin nasal spray. I went to two drug stores looking for anything that could stop a bloody nose that was really nasty ugly. I got the nose spray the doctor mentioned as well as some sterile gauze that Joe liked the best since it soaked up the blood better.

Today Joe had his regular appointment at Winship/Emory. He has his blood drawn at 10AM and we headed upstairs to see Dr Winton. We saw Jessica Neely PA instead who stated that Winton wanted us to postpone the trip to Houston tomorrow. With Joe's blood counts being so low. travel was too dangerous. When I saw the numbers, Joe's counts were the worse he ever had in all areas. His White Blood Count was .4 (normal 4 - 11). Red Blood) Count was 2.15 (normal 4.5 - 6). Hemoglobin was 6.5 (normal 14 - 18). Hematocrit was a febrile 19.4 (normal 40-54). Platelets were a pitiful 2 (normal 140 -440). No wonder Joe looked and felt horribly weak. No wonder we could not get the nose to stop bleeding. How can a human still able to function with levels like that? It shows how amazingly strong the human body is and how the grace of God keeps us living.

Jessica sent Joe to the Infusion department with the order for 3 units of red blood cells and a unit of platelets. By the time they were finished at 7:30 PM, Joe also received two additional large bag of platelets. The most blood products he has ever had at one time.

I called MDACC who quickly changed the test dates to 2/16 and 2/17. Since Joe's next HyperCVAD-R Part A was due to start on 2/18, Joe finally decided to do the rest of his care at MDACC under Dr. Romaguera. After Part A for 5 days , there is only one more chemo session left, which is Part B. The best care and facilities are at MDACC and I am so glad that Joe finally realized that. So we will make Houston our temporary home once again for maybe six weeks or whatever it takes.

The most important thing is that we have got to do right now is to get Joe's blood counts where it is safe for him to travel. We also need to get his platelets above 70 so Joe can continue the chemo treatments. We are scheduled to go back to Winship/Emory on Wednesday to have his blood retested. From past experiences once Joe starts to recover, he recovers quickly. Please pray for this to happen as well as safe travels to Houston followed by the last two chemos, then remission. We are praying so hard to hear that word, "REMISSION."

May the Lord be with you and your families!

Friday, February 4, 2011

2/4/11 Brief Update

Joe was released from Emory on Monday after receiving two units of red blood cells since his hemogloblin went below 8.1. We did not get home till about 4PM. Joe was extremely weak and pale. He could hardly get into the house from the lack of stamina. I ordered Joe to sit on the couch and his job was to rest, drink liquids, take his meds and sleep for the next few days so his body and mind could adjust. As a caregiver, you hate seeing your loved one like this but you do all you can to make their lives easy. I unpacked the car and got everything back to where they belong. I also set up the pill organizer which takes concentration and lots of time.

Joe did not have a followup blood test and doctor visit until Thursday. Jessica Neeley proudly announced that Joe did not need any transfusions since his counts were in the tolerant range (not normal). The nadir point will come on Monday where the chemo has done its massacre then more than likely Joe will need a transfusion before we fly to Houston for the tests and visits at MD Anderson Cancer Center. Jessica measured the outside parameters of Joe's spleen which had been grossly enlarged because of the other blood disease he has, myelofibrosis. Before all the chemo started, Joe's spleen measured a monstrous 30 cm and on Thursday it was only 10.5 cm. It is an awesome reduction and a positive outcome of the chemo which seems to have worked on the myelofibrosis. Tests by MDACC hopefully will determine that. Jessica stated that it was not unusual for Joe to be even more wiped out from the chemo. She believes the steroids has weaken his muscles and encouraged him to exercise as much as possible. It is about impossible since he is so weak.

I continue to get physical therapy on the shoulder and the other days I do water aerobics for an hour. The two shots that I got have worn off thus the pain is gaining in intensity each day. My sleep is awaken when I hit the wrong spot and then it is a huge OUCH!

Till another day! Ciao!