Tuesday, March 29, 2011

3/29/11 Healing at Home

Joe is so happy to be home and the healing of the Fungal Pneumonia seems to be making progress. It has been good for me too since I am able to sleep late without Joe waking me early up the studio apartment with turning the TV on and moving about. One forgets how good it is to be in your own bed with the right lighting, quietness, your own sheets and pillows. It seems to enhance my dreaming where I escape into a fantasy world.

On Sunday Joe had been up for two hours before me. He was in the garage cleaning my tires and front bumper from the collage of smashed bugs. I was dressed for church. I asked Joe if he was going with me and he said that he was not up to it. I requested in sweet way that I really would like him to go to church with me that it would mean so much to me. He changed his mind and got dressed for church. He looked so handsome when he came down the stairs with his dress slacks, nicely pressed shirt and his dark blue double breasted sports coat. I really love his fuzzy white hair which is starting to get some length to it on the sides. We got to church about 10:45AM where we were the designated greeters but I had Joe go ahead and sit down in one of the pews since he could not stand that long nor shake hands. It was great being a greeter this past Sunday where everyone could see that we were back among the congregation. I was able to thank as many as I could for their prayers that have helped Joe and me make his journey with all its twists and turns.

After church I drove us up to Dawsonville where Joe's younger sister, Donna, lives with her husband, Rick. The drive takes about an hour which is a piece of cake for me these days. I find driving to be a stress reliever for me. We arrived at 2PM and were delighted to also see Jessie, Joe's niece, with her two pretty young girls whom we love. Donna cooked some of Joe's favorite dishes. He craves her great Mac'N'Cheese which is always good. She also had her famous spinach salad that Joe enjoys. Along with that she had fresh sliced cucumbers in vinegar, black eyed peas and meat loaf. We all sat at the same table and shared family news and future plans. For dessert Donna made a chocolate pie that Joe said was delicious. I had fresh strawberries. NASCAR was on TV and Rick explained to us some of the details of racing since we do not follow that sport. We got home about 6PM where I gave Joe the ERAXIS IV which I have been doing early each evening. It does get easier and easier though tonight I cut the IV bag with the scissors trying to taking it out of its sealed bag thus that bag went into the trash unfortunately.

Monday morning started with a blood draw at Winship at Emory which was overflowing with people. Joe's appointment was at 9am and the blood was finally drawn at 10AM. Up to the second floor we headed waiting for the blood results to come in with anticipation so Jessica. Neely, the PA, could examine Joe and review the blood counts. She was astonished to find that Joe's spleen had shrunk down to 9cm which is fantastic. The blood results improved dramatically from the last two tests which I are below.

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

.................... 3/28/11..........3/21/11................. 3/14/11.............................3/8/11
WBC..............(3.1)............... (8.1)......................( 33.7).............................( 62.7)
RBC...............(4.63)............( 4.27)....................( 4.34 )............................(3.85 )
HGB...............(13.9)............(12.9 ).....................(12.9 )..............................(11.6)
HCT...............(45.7)............( 41.2).....................( 40.5 ).............................(35.9)
PLT................(156)...............( 68).......................( 48 )................................(62 )

When I got home, I scanned the report and sent it to Dr. Romaguera at MDACC as well as letting him know that starting on Sunday, Joe's cough subsided a large amount. He was pleased to hear that and see that the red blood counts had all improved. He was very concerned about the drop in the White Blood Cells and the Neutrophils 33% into the low range which means Joe is susceptible to infections. He warned me that if Joe were to get a fever over 100.5 that I should take him to the ER to have them give him an IV of antibiotics. His instructions included to have Joe's blood tested again on Thursday and to give Joe only one shot of neupogin tonight since Joe's white blood counts usually jump up so substantially.

I emailed Jessica at Winship at Emory to schedule a follow up CBC on Thursday morning which is set for 10 AM. She was sweet enough to have Joe's blood taken on the 2nd floor where there are no crowds or unreasonable waiting times.

Today was the day to get my car serviced on at DeKalb Tire. It was suppose to take 90 minutes but took 3 hours. Joe and I went to lunch at Jason's Deli then went over to Home Depot to get some more grass seed, Weed and Feed, and some liquid weed killer to attack chickweed. Joe dropped me off at DeKalb Tire thinking my car would be ready in a few minutes but there I sat for another 90 minutes. At least Joe was back home so he could rest. Joe's truck was not in the driveway when I got home. He sent me a text message that he was walking the track in Lilburn which he walked around three times. Wow! He really is feeling better and getting his strength back. The good thing is that he did it on his own without me. Being home is working its healing powers.

The rest of the afternoon I worked on the lawn by putting fescue seed in some of the barren spots. The spreader was used to spread the Weed and Feed into grass areas to rid off the weeds that still were there. I used the liquid weed killer with the hose to hopefully kill the chickweed in the areas where grass does not grow because of the shade.

My wonderful neighbors, Charlie and Nancy Lester, across the street delivered us a home cooked meal at 6PM. Joe and I enjoyed the meal of salad with Charlie's homemade family dressing recipe, lasagna, rolls, Italian Red Wine and ice cream on a stick. Joe was crazy about the salad and had two bowls of it. He did pretty good on the lasagna by eating one and half servings. Max also got a serving after it cooled down. I was so tired from doing the lawn that it was such a blessing to have dinner served to us. Thank you to the Lesters.

Time to lay back and take it easy.


Friday, March 25, 2011

3/25/11 HOME!!!!!! and the experiences

Yes, we arrived HOME in Stone Mountain, Georgia at 5:30PM on Thursday, March 24. There is a story to tell what happened to get to this point.

On Tuesday Joe and I spent the day in the studio apartment organizing and packing what we thought would fit in the Lexus on our drive home. We had to throw out a bunch of stuff.

The day was filled with so many phone calls back and forth all day long with the MDACC Case Manager and eventually Applied Health Care who works very closely with MDACC. They have the expertise working with health insurance companies. Medicare does not cover Home Care IVs which I knew already but Joe's United Health Care from AT&T covers it up to 90% which was preliminary confirmed by Applied Health Care. They work with them on a regular basis. If we had just Medicare, we would have to go to the hospital everyday to get the IV. It would be difficult to leave Houston which would make Joe an unhappy camper. By the end of the day we got a call from the RN Naomi who would be coming to the studio apartment the next day to teach me how to prepare the Eraxis IV and give it to Joe. She told me that the medicine and all the supplies would arrive by 10:30 AM on Wednesday and that she would come to us at 9AM.

I knew that I had to have a good night's sleep on Tuesday so we both headed to bed early. To help me relax and turn off the brain and emotional charges, I took a Xanax and it worked. Joe got up first so he took Max out and went to Panera and got take out for me. I took a shower to wake all my cells up. The day's agenda did not start well with Naomi being 30 minutes late because of the historical Houston rush hour traffic which crawls at a snail's pace. Since it is the norm for Houston, Naomi should had left home earlier. She started with telling me what everything was. Oh my, there is so much stuff to learn and do! I stayed alert to make sure I understood everything that she was telling me. The ERAXIS comes in a separate sterile refrigerated package along with a huge syringe, a needle, saline solution. There is another sterile package with the tubing, reservoir, regulator, on and off roller contraption. Among the other items that I needed were latex gloves, alcohol wipes, scissors, a large hook to put the ERAXIS, and more heparin as well as antiseptic hand lotion. Naomi spent an hour and half teaching me with the hands on approach. Shei was a great thorough teacher. Naomi got a call from her office to tell her the method of preparation is different which freaked me out. Once you intensively learn one way then you change it, it is difficult to keep things straight. She told me that I was going to have to mix the medicine together. I would be given two sterile bottles as well as a saline IV bag with two entries. One entry will be flat and the other has a blue rubber cap on it. Here are the steps as well as I remember them.

1. lay out all your supplies on paper towel on the table in the order you will use it.
2. wash your hands for 15 seconds and dry them with a paper towel. It is best to take off all your rings,watches and bracelets before washing.
3. Put a small amount of antiseptic in your hands and ring your hands till you got it all over. Let it dry completely on its own.
4. Put on the latex gloves
5. Put the sterile needle into the HUGE 30 ml syringe
6. Remove the metal bottle tops of the ERAXIS and Bacteriostatic Water
7. Push the needle of the syringe into the Bacteriostatic Water with the bottle up in the air and the needle only a little bit into the bottle. Pull the Syringe handle down to where there is a bit more than the 30 ml of the water in the Syringe so when you let up a bit, the air will be removed.
8. Take the syringe of water and push all of it into the rubber top of the ERAXIS. When finished place the plastic cover back over the needle that protected the needle.
9. Gently shake the solution until the ERAXIS is completely dissolved.
10. Take the protective off the needle on the syringe and push it into the dissolved ERAXIS bottle with the bottle upside down with the needle showing only a little bit to prevent air from entering into the syringe.
11. Pull hard down on the syringe handle till the syringe in filled to 30 ml.
12. Take the IV bag that has Sodium Cloride Solution in it with the nozzles hanging down. Wipe with an alcohol swipe on the nozzle that has a flat top.
13. Push the Syringe in the ERAXIS solution into the flat part of the nozzle till all the solution is in the IV bag.
14. Turn the IV bag up and down several times to assure the ERAXIS is mixed in completely.
15. Unwrap the EZ Regulator and Tubing.
16. The part of the tubing that has a long white top to it with a clear reservoir is the part that goes into the IV bag.
17. Assure the on and off roller switch is in the OFF position which is rolled UP. The liquid will not flow into the full line yet
18, Take the white plastic top off the tubing and then remove the blue rubber tip off the other nozzle on the IV bag then push the end into that nozzle tightly.Assure the on and off roller switch is in the OFF position which is rolled UP. The liquid will not flow into the full line yet.
19. Now you must squeeze the reservoir until it is half way full.
20. On the regulator turn the knob counter clock wise till it it passes the 300 mark which means it is wide open.
21. Open the line by pulling the the roller all the way down.
22. The ERAXIS will flow into the line. All air must be out of the line. You can watch the air bubbles make their way to the end of the line. It is good to have something to let the liquid drip into as the air bubbles make their way down. This can take awhile but be patient.
23. Wipe the PICC line you are going to use with an alcohol swipe then flush the PICC lines with Sodium Cloride Solution.
24. Remove the plastic cap off the end of the IV tubing and place it into the PICC line.
25. Open the PICC line.
26. Place the regulator at 83 (between 80 and 86).
27. Open the Valve by rolling the roller up.
28. The IV should be working by seeing a little drop out of the IV bag into the reservoir.
29. It will take about 90 minutes for the ERAXIS IV to finish. Once the reservoir in empty, it is done!
30. Close the PICC line. Close the IV line. Remove the IV from the PICC line.
31 Take another Syringe of Sodium Cloride to flush out the used PICC line and remove the air by pushing the syringe up.
32. Open the PICC line
33. Use an alcohol swipe to clean the PICC line.
34. Very slowly push the Syringe of Sodium Cloride into the PICC line.
35. Take a Heparin Syringe and push it up to about 3 ml and get the air out.
36. Place the Heparin on the PICC line and slowly push the Heparin in the line.
37. Throw everything in the bags away. None of it is reusable.

Now, this is what I remember. It is very possible that I left out a step or two but now you can see how overwhelming it can be for a caregiver who already has enough on their shoulders.

Meanwhile Dr Romaguera calls Joe on his cell phone. I have no idea who Joe is talking to or why since my mind has been focusing on learning how to do the IV. He tells us that Joe must come back to Houston for a follow up and tests on April 6 to re-evaluate his Fungal Pneumonia and if the current medication is working as well as the medical staff to determine what next. It is very doubtful that the fungal infection would be gone so soon. We had thought that we would not have to be back at MDACC until 4/27 but there was a change in the plan at the last minute. We decided that Joe would fly back to Houston on his own the day before and come home the evening after he was done with all that needs to be done. Dr Romaguera said Joe needs to get a weekly blood test at home and be examined by Dr Winton or his PA each time. My mind is running wild with thinking of all that I must set up, the flights, hotel, Houston transportation, the blood tests and exams in Atlanta.

Now it is 12:30 CST and the medicine and supplies still has not arrived from Home Health Care. Now the hotel's front desk calls me and asks when we were checking out since it was pass the check out time and the maid needed to clean the room. I explained that we were waiting for the medicine and supplies to arrive. Meantime Naomi was having the both of us do some massive paperwork. Heck we still had to pack the car and drive halfway to Atlanta mostly by myself. The circuits inside my brain short circuited since I reached the max that I could handle. I really wanted to postpone us going home until the next day. It was too much for me to handle. Joe insisted on heading home. Finally, I said to Joe and Naomi that I was STRESSED. I removed myself from the room and went to the bathroom where my tears flowed and the lump in my throat was about to burst. I stayed there about 5 minutes and came out. The deliverer of the medicine and supplies was finally there. On my goodness, there was two large white bags of supplies and one refrigerated box of ERAXIS. How in the world were we going to get all our stuff and all this medical stuff in our car with room for Max to lay down. Some more tears ran down my face as I slowly calmed down. The deliverer leaves after Naomi did the inventory of the massive amount of stuff. It was overwhelming. Naomi gave me her cell phone to call her if I have any questions and we hugged each other good-bye.

Now to get to work with packing the car! I gave the front desk the leftovers in our refrigerator from ice cream, juices, desserts, cookies, candy and four 12 packs of diet coke since there was not enough room in the car to take them. Joe got the luggage cart and took the first two carts to the car and did his best to get what he could in the trunk. I tried to get the hotel to store our HP printer when we came back on 4/27 but the manager said no. In the back seat of the car, I got my luggage cart full of stuff which had the refrigerated box of ERAXIS, the printer, a plastic file container of records, a laundry basket, my pillow, Joe's laptop bag, a cooler filled with diet coke, Max's food and water bowl, a large bag of whatever junk of mine. Joe was astounded that I was able to get it all in there with plenty of room for Max to lay down and be comfortable. I was drenched in sweat from working so hard. At 12:50 PM CST we were on our way with me a bit breathless. Joe asked me if I was OK. I told him not yet but after I get on the road for about 15 minutes that I would be fine. I was. Joe's job was to keep me happy with my Diet Cokes as I drove to Slidell which is about 6 hours and 15 minutes from Houston. I drove all but one hour. We checked into La Quinta Inn off of Interstate 10 in Slidell about 7:30 just before it got totally dark. Thanks to Yelp and Trip Advisor I found a restaurant with a great Louisiana Cajun/ Creole atmosphere located on a Bayou and only 10 minutes from our hotel. The place was called Palmettos on the Bayou where the meal was great with prefect tasty tender flash fried oysters with a creamy horseradish sauce that we shared. Joe and I also shared a cup of some tasty award winning Seafood Gumbo. Our main dishes both had a Creole flavor to the meat which was a little bit sweet. Max enjoyed some delicious left overs from Joe's large fillet and my french cut pork chop. The smashed spiced potatoes were very flavorful but we could only taste it since we had no more room in our tummies. We sat outside on the large patio with strings white Christmas lights in the trees and fence. Joe was a bit cold so he borrowed with the waiter's approval a white tablecloth to put around his shoulders.

We got back to the hotel about 9:30 CST and we were both asleep by 10:00 PM CST. No surprise there with the stressful long day.

We got back on the road to Atlanta at 7:45 AM CST. The drive was about 9 hours with a lunch break in Montgomery. Joe gave me an hour and a half break from driving. He did quite well.

It was about 5:35 PM EST when we got home. When I got to our subdivision, I drove really slow to savor the ambiance of the beginning of springtime in Atlanta. Atlanta in the springtime is what heaven must look like with so many white mature dogwoods in bloom or about to bloom. The pink azaleas were popped open in all their glory. The red bud trees and plum trees were bright in color. The hardwood trees were just getting their leaves. The Crabapple trees had pinky pink clusters of blooms. I drove even slower up the hill of Musket Court to our home. OH MY! It was picture perfect. Our reseeded lawn was lush and thick and Irish green. Mr. Moody has just mowed and edged our lawn and it looked like it was sodded. It is how we dreamed our lawn would look like someday and here it was before us. The four Japanese Maples that I had planted last fall had all the leaves and looked so healthy.

Max jumped out of the car before Joe could get a foot out. Max was happy to be home also as he ran to the garage door into the house. On the kitchen table was a note from our co-ed next door neighbor, Emily Bennett, who left a welcome note to all three of us. She bought us some bananas, apples, wheat bread, English Muffins, Fig Newtons and plump muffins so our cupboards would not be bare. Joe and I are so blessed to have such amazing neighbors.

Joe and I unpacked the car right away because we knew if we did not, it would not get done that night. The medicine had to be placed in the refrigerator. I lugged the heavy stuff upstairs since Joe does not have the strength to do that. We decided to go to dinner right away since we knew if we sat down on the couch that we would not move. Sangria's Mexican Restaurant was both our choice since it was close and we wanted their tasty Pollo Ranchero. The staff makes us feel at home there since we eat there at least once a week.

Once we got home, it was time for me to do the IV which started at 7PM and lasted till 8:30PM. I think that I did it OK the first time. I am sure in a few days I will do it like a pro. Sure, Bonnie!

Before we went to bed, I made Joe's flight, hotel and transportation arrangements for his next visit to MDACC on 4/6. I told him that since it was only one day that I thought he could handle it by himself and he said okay. Joe and I hit our king sized comfortable bed at Midnight. After laying there and saying my nightly prayers, I still laid awake. I got up and went downstairs and followed by instinct to make air reservations for me to go with Joe . God talks to us in various ways. I have learned to listen to Him. I used to call this instinct but I now believe that it is God directing me. As I was on my lap top, I went into some of Joe's lab reports since there are new results on a regular basis thus it is a good thing to keep checking my.mdanderson personal site. What I read, scared me! There was a cytogenectic results of the bone marrow stated that the deleted 13q chromosome was predominant which indicated persistent disease. My heart dropped to the floor and my heart raced. It sounded to me that deep into the testing of the bone marrow that the mantle cell lymphoma was rampart. I thought that it would be devastating to Joe to find this out after all he has been through. I fired off an e-mail to Dr. Romaguera to ask him exactly what this meant. Once he responded to me then I would discuss the dismal news with Joe.

Somehow by the grace of God, I slept and slept. I knew that I was physically and mentally exhausted but gee whiz, I did not wake up till 12:15 PM!!!!!!! Joe had been up for hours and Max was laying on the floor in our bedroom waiting for me to awaken from my long beauty sleep. Joe was in the garage cleaning the wheels of the Lexus, the windows and the front bumper where insects from the deep south and bayous took their eternal dirt nap.

I pulled up my e-mails and uh oh! Joe had opened Romaguera's response to the e-mail that I sent in the middle of the night. I braced myself to open and read it. Dr. Romaquera said that the persistent disease is the Myelofibrosis since Mantle Cell Lymphoma has nothing to do the the 13 q deletion chromosome. The most common chromosome that Mantle Cell Lymphoma shows up are numbers 11 and 14 which are transposed. Whew..............Thank you, Lord.

I told Joe that I had made air reservation for me to go with him to Houston the first week of April. He said GOOD since he does so much better with me with him. It makes him feel more at ease since I can ask the questions and make sure we stay of schedule.

It is important to me to advise everyone that Myelofibrosis is incurable and effects the bone marrow. The doctors state that we must conquer the Mantle Cell Lymphoma before we try to do anything with Joe's Advanced Myelofibrosis. I have deluded myself with hopeful thinking that maybe all the treatment for Mantle Cell would also help with the management of the Myelofibrosis. Joe is the only person in the world at this time with both diseases. I still pray that somehow the Mantle Cell protocol would help the Myelofibrosis. I hope that God forgives me for asking so much from Him but He gives me HOPE. I have faith that God will see us through all of these challenges.

The IV tonight went OK until the very end. Joe was in the living room watching his programs with the IV going and I was in the den,using the DVR to watch the programs that I missed with all the happenings in Houston. Joe came into the den and said the IV was done. When I looked at the IV line, I saw blood in the line. Oh My Goodness! What have I done and I panicked while Joe thought it was no big thing since he felt fine. I called Naomi, the IV instruction nurse and she told me that the IV was completed and the valve not turned off us the blood was sucked into the line. It turned out Joe fell asleep on the couch during the IV and went pass the 90 minute time. Stupid Me! I thought that he would stay alert. Next time I will set an alarm since Joe can not stay awake.

Enough folks. I have typed enough for one blog. This writing has really wore me out remembering all the stuff that happened which was like reliving it all over again. UGH!

Good night. Till next time!


Monday, March 21, 2011

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.
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!

Sunday, March 20, 2011

3/19/11 Dallas and a pothole called Fungal Pnuemonia

The journey since Tuesday has been really rough with the route taking a different direction.

When we woke up on Tuesday morning, Joe had a gray aura and I was taken back by how he looked as well as his body language. He told me that he was very weak. I recommended that we stay here in Houston where he could rest but Joe insisted on going to Dallas to visit our amazing friends, Julie and Russell Stephens and their two little ones. He felt that he had to get out of the small studio apartment that has made him homesick with a case of severe cabin fever. Joe stated that he would be just sitting in the car as I drove so he would be resting anyway plus driving through the open countryside would make him feel free. I recommended to him several more times to stay here but he said let's go! So off I drove five hours to north of Dallas to a lovely suburban town called Highland Hills. Joe did enjoy the drive and seemed to be hanging in there. Of course I kept asking him how he was doing and said I could turn the car around and go back to Houston if he said he needed to. We arrived at the Stephens home about 4:30 PM. We did hit some of the well known nasty Dallas traffic since our route went right through downtown. I missed the exit off the interstate that my mapquest told me to get off at so I got off at the next one. Somehow I remembered this was the exit we turned off of last year when we visited. My memory served me right and I remembered all the turns to get to their lovely home. Campbell, their 2 year old was awake, and she greeted me with a big hug as well as Julie. Campbell has grown since last year and communicates exceptionally well. She has the best and cutest expressions and those eyes with the little coy smile melts me. Finally, Lily, the 4 month old woke up from her nap. This baby is the spitting image of her Daddy. Julie showed us pictures of Russell when he was a baby and you would swear it was Lily. I have never seen a baby resemble a parent so much as Lily does. As Julie cooked a tasty dinner of chicken scallopini, pasta and salad, I headed to the grocery store to shop for the Lasagna I would make for the family on Wednesday. While I was gone, Joe took at least an hour nap. At dinner he ate a little but not enough to keep him from losing more weight. Max made himself right at home and got alone very well with Julie's black lab called MG. MG is a very well behaved and congenial dog. I remember when he was a puppy and he ate Julie's carpet up in a bedroom while she was gone at work. He was wild back then. Now he is mellow and so lovable.

Joe loved the bed in the guest bedroom. The sheets were super smooth and the blankets soft and fresh smelling. He slept very well. In fact he slept nearly 12 hours. We did not wake up till after 9 AM and the kids were up and so quiet. What amazes me about Campbell is how she can played alone so contently and entertain herself. I have never seen a 2 year old do that before. Julie baked from scratch some delicious light cinnamon biscuits. Joe and I ate one or maybe I ate two. Julie is such a great cook and she enjoys pleasing people. After she did the baking, I started on making my Italian Tomato Meat Sauce from scratch with Meatballs and Sweet Italian Sausage. Yes, the sauce and meatballs came out wonderful and we had them for lunch. As I cooked, Joe sat out of the deck enjoying the fresh air and warm temperatures under the shade trees. At about 2PM Joe tells me that we need to go back to Houston and that he is so weak that he did not think he would make it through the night. Whoa! It was a scary thing to hear that come out of his mouth. We broke the news to Julie who was disappointed as I was too. Julie is like a daughter to me and I love her so very much and to leave her home in less than 24 hours after we arrived was awful to state. I gave Campbell and Lily their gifts before we left. Julie came out to the deck and the three of us held hands as Julie said an amazing heartfelt tender prayer which made me cry. She gently wiped my tears with her fingers. Yes, it was touching and it said everything how we felt about each other. So we left Highland Hills at about 2:20 PM and I drove back to Houston. We arrived back at the studio about 7:30PM. AT 8PM Russell called us to make sure we arrived safely and that Joe was okay. He said we were welcome to come back anytime in the future. What a good kind man he is! Joe hit the sack early without any dinner though he did eat some strawberry ice cream as I had cottage cheese with strawberries. Thursday we stayed around the studio apartment and kept him hydrated and rested. Thursday morning was the last of his antibiotics that may have been causing his severe lack of appetite.

Friday was the big day to find out the results of all the tests with the Infectious Disease Department at MDACC. Joe's appointment was at 2PM and we were taken to the exam room at 2:35PM. Kelly, the Physicians Assistant, came in to talk to us about the results. She told us that Dr. Torres was unavailable since he was making rounds at the hospital. Kelly told us that Joe had Fungal Pneumonia but they did not know what type yet and would not know until another 2 weeks. I asked the simple and hard questions to her for Joe and me. Joe has a hard time expressing himself and depends on me. Kelley answered one of my questions that it would take up to two months to clear the fungus. WHOA! Both Joe and my body language sunk to low depths. Kelly stated that Joe would not be recommended for chemo with having this serious infection that it could be deadly with the immune system decreasing during chemotherapy. My lips started to tremble and I could not stop them. The more I tried to stop the trembling, the tears started to flow down my face. I tried so hard not to cry but I could not stop the tears. The tears were for both Joe and me since I knew how he felt. He had become depressed, suffered from anxiety and worry. He did tell Kelly that something was going to have to happen one way or the other since he was so weak. He told her that he just did not think he would make it much longer with the way he felt. If it was going to take two months to get over it, he wanted to go back home to Atlanta. Kelly left the exam room. About 15 minutes later in walks Dr. Torres and Kelly. We were relieved that Dr Torres left his rounds to come to speak with us (God must have sent the tears). He told us the good news is that they caught the fungus as it was only in the lungs and that it had not entered the blood stream. He told us there was no way that Joe could do the next two rounds of chemo with this fungal pneumonia and that it could end his life. Joe told Dr Torres about his severe weakness, severe loss of appetite, weight loss in the last 3 weeks from 178 to 165. Joe told Dr Torres that if it was going to take 2 months to get rid of it, he wanted to be home. Dr Torres stated that Joe was scheduled to see Romaguera on Monday but Joe would not be getting chemo. We should come back in three weeks for a follow up. It was not feasible to go back and forth to Atlanta to Houston. Dr Torres said that he wanted to confer with Dr Romaguera about Joe's condition and what he recommended. He left the room and 30 minutes later he comes in and tells us that Romaguera and he had come up with a plan. First of all, Joe would have a CT Scan of the chest early Monday morning at 6:50 AM. Afterwards Joe would get his blood work done followed by an visit with Dr. Romaguera who would review the CT scans and see how the lung infection looks on Monday. The two doctors decided that Joe should receive Eraxis antifungal medication via IV for five days at MDACC Ambulatory Bed Unit. They decided that it would best for Dr Romaguera to order the home care of the IV of Eraxis for three full weeks because he would have better chances at getting United Health care to cover it. I do not see how we could go back to Atlanta with me doing all the driving for two days with worrying about Joe's condition and giving him the IV. All I could imagine was driving over the Louisiana Bayou Bridge which is 30 miles long with Joe getting sick in the middle of it. I also was worried about going back to Atlanta with the lack of coordination of Joe's care between departments. They just do not have the urgency that MDA does. MDACC gets it coordinated with the other specialties within 24 hours. In Atlanta it would take weeks to see an Infectious Disease person which we had already experienced thus convincing us to come back to Houston. Thank God we did or Joe would have been put through the chemo and may not have been walking on this earth after it. Joe still wants to go home stating if he was going to die that he wanted to die at home. OMIGOD! How was I going to deal with this when the both of us knew the best care was at MDACC. Needless to say, Friday was a dreadful stressful day. It was a low point for the both of us in the mantle cell lymphoma journey. Dr Torres also said he was doubling Joe's dosage of the Vfend (antifungal) and giving him a new prescription for a different antibiotic since we need to protect Joe from getting a bacterial infection which would make things even more complicated. He wants to see Joe back for a follow up appointment on April 20th but I am going to request it to be changed to April 28th or so. We want to be with our granddaughters and son for a five days during Easter break at Cape San Blas where I have rented a condo on the beach.

Before we left Dr Torres, I got a copy of Joe's latest blood tests and there was good news there. His white blood cells dropped from 63 to 34 in 6 days with most of the white cells being neutrophils (good guys). His red blood cells increased from 3.85 to 4.34 which is the best they have been since last year and close to the normal range. Joe's hemoglobin also had its best results in over a year going to 12.90. Joe's hematocrit was in the NORMAL range at 40.5 and that has not happened in 3 years!!!!! The sore point was that Joe's platelets continue to sink and now are at 46 whereas low normal is 140. I knew Joe's platelets were low by looking at his arms that have the nasty dark blotches. I am sure Dr Romaguera will be concerned about that.

We headed over to the ATC Bed Unit on the 10th floor where Joe was considered a walk-in to receive the ERAXIS IV. We had to wait for over an hour but it really did not feel that bad since I had to get Joe's prescriptions filled and get some snacks and Orange Soda. The bed unit is similar to a small single hospital room with a bed, dresser, sink, TV and a chair for the caregiver. The RN was a sweetie who handled all our requests with a smile and happy to do it attitude. She was a Godsend after the rough stressful day. The IV was 200 cc thus it would take three hours for it to be given which means we would be there till 1oPM. Joe fell asleep as I caught up on news and e-mails. The IV went without any complications. Thank you, God, again.

The appointment for the next ERAXIS IV was at 10AM in Saturday on the second floor ambulatory bed unit. Since the dosage was decreased to 100 cc, it would take only two hours. Again we had a good RN who saved my day by getting one of the nozzles off the PICC line that was stuck on so tight that I could not get it loose even with a tool. On the way back to the studio we stopped at Le Madeline's and I was ecstatic to see Joe eat all his Caesar Salad and cup of a rich Tomato Basil Soup. When we came back to the studio, we just sat around and watched TV for while until Joe requested that we go to Memorial Park with Max and just sit in the fresh air. On the way to the park Joe asked me to stop at McDonalds to get him a Medium Chocolate McShake. You betcha. I stopped. We found a great open picnic area under the post oak shade trees where Max could roam a bit without a lease. He stays near us where he can see us. Joe got out our folding canvas chairs and we sat out there for nearly two wonderful relaxing hours doing nothing but enjoying nature and the birds singing. Joe brushed Max's fur which looks wonderful. It was wonderful to see that Joe drank most of the shake and the whipped cream except for maybe the last inch. PROGRESS! We left the park about 6PM and we decided to go see a movie and have dinner afterwards.

We left the studio at 6:45 PM to head to the Regal Theater over on Willowick and Richmond. I was able to get a parking spot on the street where I did a perfect job of parallel parking. We got tickets to see "Paul" which is a Sci-Fi spoof comedy. Before we entered the theater Joe brought a small bag of buttered popcorn and a small drink. I can not believe that a small drink cost $4.75 and with the small popcorn the total was $10.75. The cashier asked if I also wanted to buy some candy. I replied that I would need to mortgage my house in order to buy any more concessions. We all laughed. The movie was perfect to boost both our moods even more. We laughed till it hurt. It was a crazy movie that was off the wall but funny - a real escape from reality. By the way Joe ate 75% of the bag of popcorn all by himself. See, your prayers are working once again!

The movie was over at 9PM so we decided to get dinner at our new favorite Mexican Restaurant in Houston called Chuys Cantina. The place was filled with young people all in a festive mood that added sizzle to the colorful decorated rooms. They also have a wonderful patio out front. Joe had a special Taco, guacamole salad, con queso. He ate all the taco and half the salad but all the guacamole on top of it and half of the con queso. Good Job! Today Joe's appetite turned around. I will continue to pray that it continues to increase where he starts to gain weight. Oh, by the way, his weight was down to 161.5 pounds when he was weighed in at the hospital this morning.

Joe headed to bed at 10:30 and is sound asleep as I have been working on the blog. I can not thank you all for the wisdom, kind words, good thoughts, chit chats, and of course the mighty prayers. I am thankful how God keeps listening to the prayers and works in his mysterious and wonderful ways that we do not even realize is happening. I am so thankful to the Almighty for MDA with their compassionate medical staff and expertise. I am also thankful for the financial means to handle the expenses of a temporary home and the medical bills after insurance has paid their part. I was astonished to find that in 2010 Joe and I spent over $20,000 on medical and medical travel expenses. We can see why so many people could not do this because of how expensive it is even with insurance coverage. Joe has Medicare A and B and United Health Care PPO through his retirement from AT&T. What about all the people who have no coverage at all? You know the answer to that. Joe and I are surely blessed and were able to work hard for so many years to have it. Thank you Lord for being there for all those years.

Enough of the soapbox, Miss Bonnie! So my dear family and friends, I love you. You all have a part of my heart.


Monday, March 14, 2011

3/14/11 Mission is a GO! We think.

Our appointment with Dr. Romaguera was quite early this morning. I did not sleep after 3Pm because of my stupid restless leg syndrome which I believe is from anxiety and stress even though I do not feel that way. Our bodies rebel and tell us something needs fixin'. I asked Romaguera how the Washington, DC conference went and if there was any new news. All he say there were some advances in the molecular area that was discussed a bunch. Today Joe's spleen measured 14 cm versus the 30 cm when it was at its largest at the time of Mantle Cell Lymphoma diagnosis. Joe's cough and lung infection has improved tremendously since Joe started the Inhaler and the Mucinex. It is about time since he had the annoying infection for 5 months and he is sick of it to say the least. We bought to Dr Romaguera's attention that Joe's appetite has decreased tremendously over the last month to only a third of what he used to eat. Joe says he just feels full or describes it as a bloated feeling. Joe's weight today was only 165 pounds on his 6 foot frame. His neck, arms, legs and rear end is very thin. Dr Romaguera prescribed Metoclopramide to be taken before meals and at bedtime that should increase his appetite. He feels that Joe needs help getting the food to move through his digestive system. I pray that it works. With the body's lack of fuel, Joe's stamina gets weaker which is a concern to the both of us. Dr. Romaguera foresees Joe will be able to get back on the chemo regimen of HyperCVAD part A. The good news with that is Dr. R offered to let Joe do part A on an out patient basis like Holli Baker did last week. Holli did very well with it even going shopping and apartment shopping with a chemo backpack. There would be lots of trips to MDACC but Joe would be sleeping at our "home" with Max and me. Plus, he would not have to eat hospital food which he says taste all the same after while. I believe doing it on an outpatient basis would be good for Joe's morale. Part B of the chemo is more powerful and that would be done on an in patient basis. The decision would be made on Monday when we see Dr R again.

Joe and I looked at the possibility of moving to a new location to have more room than a studio apartment but our search failed when the pound limit on pets is 20 pounds. We both want our best friend, Max, with her so we are staying put at Homestead Studio and Suites.

Tomorrow (Tuesday) we are driving to the Dallas area to stay a few days with our dear friends, Julie and Russell Stephens. Julie stayed with Joe and me for about a month when she got out of the Army after her tour in Iraq. She was going to commute from Columbus, Georgia to Norcross, GA for a month till her place was ready. I was her Mortgage Loan Officer so I offered her a room in our home till her home was ready. It was wonderful for all of us and we remain close friends. I can not wait to see her new baby, Lily, who is about 5 months old and to play with Campbell who is about 3 years old who is so adorable. Campbell loves Mr. Joe. We will go to the Dallas Aquarium one day and let Joe stay at the house since it may be too hard on him. The drive from Houston to Highland Village is about 5 hours which is a piece of cake for Joe, Max and me. To give Julie a little break I am going to make her a huge pot of Italian Tomato Meat Sauce and meatballs plus Lasagna. She will have at least six meals for the future. I am excited about doing this for her.

Our next appointment is on Friday at 2PM with Dr. Torres with the Infectious Disease Department which we hope that he will give his blessing in Joe restarting chemotherapy. It looks like we will not get back home to Georgia till mid May. We do have a vacation week planned with Mike and our two granddaughters at Cape San Blas located at a fabulous white sugar sand beach on the Florida Panhandle during Easter week. It gives Joe something really big to look forward to. I do not think Romaguera will have an issue with it by stalling Part B of the last chemotherapy for one week especially since we have had a 2 month delay because of the lung infection.

God hear our prayers for the people of Japan and to our MPD and MCL friends who are very ill right now or awaiting a Stem Cell Transplant. Hear our prayers for our friends who are fighting other cancers and serious heart issues. Hear our prayers for the families of friends and our friends who are in the hospital. Hear our prayers for my sons and my granddaughters. Hear our prayers for Joe and his remission and to overcome Myelofibrosis which has gotten worse. Hear our prayers for our country and our President. Hear our prayers for the people trying to be free from oppression. Hear our prayers for Peace on Earth. Hear our prayers for a cure for all cancers and Myelofibrosis.


Friday, March 11, 2011

3/11/11 Perfect Spring Day with a visit to the Houston Zoo

Our day started with our normal breakfast stop at Panera Bread. We headed to MDACC to pick up Joe's new medication, an Inhaler. It is called Flovent HFA 110 mcg. It is a steroid where Joe will take two puffs of the inhaler with deep breaths and holding it for 10 seconds. I dropped Joe off at the front door of MDA as he went up to the 10th floor Pharmacy. The Pharmacist gave him instruction on how to use it for it to be effective. We came back "home" to try it out. I primed the unit and at first I had it upside down. About an hour later Joe stated that he felt his lungs clearer but as the day wore on, he started spitting up gobs of phlegm. He can only do the inhaler once every 12 hours. We pray that it gives him some relief.

In the meantime I got a return e-mail from our dear Julie Stephens up in Dallas. She offered us the invitation to come spend two nights with her next week when he have three free days mid week. We will get to see Lily, her new baby, and get to play with Campbell who loves Mr. Joe. I offered to cook dinner one night to give Julie, a full time Mommy and devoted wife a break. It will be fun to me to do something special for Julie and Russell. I guess it has to be Italian since that is what I do best. I will make sure they have plenty of leftovers for future meals to give Julie a break once in awhile. One day we will visit the Dallas Aquarium with Julie and the kids. I think I will leave Joe at her house since I think that it would be too hard on him. I will give him a choice so he does not think I am dictating him what to do.

Joe has been suffering a serious bout of Cabin Fever that it has really gotten to him that he wants to hurry things up and get home to Atlanta. I keep finding things for us to do that won't be hard on him physically where there will be plenty of places for Joe to sit and rest. So far, I have been successful and I can see how it boosts his morale.

Today was our designated Houston Zoo day but I waited until after 3PM when the school field trips have left. There was still a good crowd there but it was very pleasant on a perfect spring day. The total cost for the both of us to enter was only about $12 which is a good deal compared to the cost of the Atlanta Zoo. The Zoo had ample free parking and is located in Hermann Park where all the Museums are. There was a Municipal Golf Course across the street with plenty of golfers taking advantage of the marvelous weather. Before one enters the Zoo you will see a large lake surrounded by the Majestic Knobby Pin Oaks. There are walking paths, large fountains, large monuments, and it is colorfully landscaped. One would think you were in Europe with their large parks. What a great place for the citizens and guests! It is all in walking distance of the Texas Medical Center. How great is that!

We walked around maybe a third of the Zoo for about an hour and a half since that was the maximum limit that Joe could handle even sitting every 10 minutes or so. He got some entertaining walking and got a jolt of happiness seeing the animals, great landscaping and walking under those great majestic Pin Oaks that I love. It was good exercise for the both of us and a wonderful way to get natural Vitamin D.

I want to thank Barbara Beckman reminding me what a real City Slicker I am. She educated me on the last blog the difference between a Bull, a Steer ((a castrated bull) and a Cow. I can hear her laughter all the way from the state of Washington. I love it and I laughed at myself also.

Thank you all for your continued prayers and your comments on the blog. I am amazed that people are actually entertained by this diary. It has helped me greatly coping with Joe's Mantle Cell Lymphoma journey. I am so grateful to new friends that I have made during this adventure who have astounded me with their courage and tenacity. They are so inspiring.

Keep Fighting my fellow Lymphoma and MPD friends and caregivers!

Please take a moment after reading this to say a prayer for the people of Japan with shocking devastation.



Wednesday was our designated Houston Livestock Show and Rodeo Day since it was Value Day and supposedly less people. The night before I studied the Rodeo website so I would have some idea what to expect and have a game plan that would make it easy on Joe. I also downloaded their app on my iPhone. I printed a map of the parking area and followed the map that was screwed up and we ended up way far away. So I threw away the map and went on instinct which worked way better. The skies were clear and the temperature was about 70 degrees. We parked in the yellow lot that had a tram to pick us up. I made a mental note in my head to remember exactly where we parked using landmarks. It turned out to be a smart move. Parking was $12 since we missed the Value Day cutoff off for parking by 3PM which would had made the cost only $5.00. It was still reasonable. The tram dropped us off right at the front of Reliance Stadium where the rodeo and concert would be later at 6:45 PM.

The first thing we saw were a very long row of large long food tents with some terrific aroma coming from all directions. The hard part is deciding which vendor to use. The attraction for some people is the FRIED FOOD. They fry stuff I never heard of such as Smores and Snickers. Joe wanted a regular plain Hot Dog and after passing about 10 vendors he found exactly what he wanted. I ended up at Goody's BBQ which I had some tender charred brisket that was very good. The food was reasonably priced and everyone could find something to satisfied their taste buds. The Rodeo had plenty of picnic tables to satisfy the Wednesday crowd. Joe and I enjoyed people watching with the Texans dressed in their authentic Western garb from head to toe. It was kind of funny to see other nationalities dressed up and in a festive spirit. Country music was blaring and the atmosphere was perfect.

After eating our grub we entered into the Reliant Arena which is humongous. Texas does not create anything small. Looking up and down each way looked like Cowboy Christmas and trying to figure out what to do first. Ah for me, it was the potty! I saw the Hayloft Gallery where the Grade School students had their art exhibit. What talented kids! I bet the ones who got the ribbons were so proud of themselves. Good Job! When I turned around Joe was no where to be seen. I waited and waited then I called him thrice with no luck. Finally he calls me on my cell phone. How I was suppose to figure out where he was? I needed to be clairvoyant. He had entered the arena and had sat in some stands halfway in the middle to watch the steer judging. I was miffed to say the least since Joe has a history of strolling off and not telling anyone where he was going. Thank goodness for cell phones. I caught up with him and sat and watched some of the steer judging. I knew why he went there was because he could sit. Joe can not walk very far before he gets exhausted. We decided to take a closer look at the steers. The ranch hands each had a stall full of hay about 10 x 10 in size which fit about three steers. The stall perimeter was made of stainless steel. There were rows and rows and more rows of steer of so many different breeds and colors. They were groomed handsomely and their coats were healthy and smooth. What magnificent prized animals they were! One of the areas on the far side of the arena looked like car washes but it was a Steer Wash. The steers seemed to love the water being sprayed on them. What is amazing with hundreds of these huge animals, the arena did not smell bad at all. There was constant cleaning going on. If the Steer pooped, someone picked it up immediately and dumped it into a special container. This was the Ritz Carlton for Steers and the ranchers.

We went onto the Sheep and Goat Judging area. The sheep were sheared and groomed. The kids who raised them were proudly showing them off to the judges who walk up and down and looked at them carefully. The judges felt their bodies. You could see the tenseness in the kids as their prize sheep was being judged.

Over to the Capital One AgCenter to see the animals giving birth and the babies. I was like a little kid again running to each stall to see the precious beings. There were four little black baby black goats prancing and jumping on each other. I saw about 10 baby piglets hungrily nursing from their mama pig who was laying down flat with her nipples sticking out of the bars for the piglets to suck the milk. They were wiggling and shaking their little curly tails and each one jumping on top of the other thinking the nipple that their sibling was sucking was better than the one they had. Hysterical! Next to them was a Mama Steer who had just given birth only two hours ago. Mama Steer was standing on all fours licking her calf clean which the baby enjoyed as it laid in the hay. There were several new calves there and several Steers waiting to give birth any minute since their bodies looked like they were about to burst. The calves at birth weighed between 45 and 50 pounds. Wow! Over to my left there were baby bunnies and guinea pigs where one could pet them. Oh my, they were soft as satin. There was so many different breeds and colors and lots of ahs being heard. A little bit further were hens laying their eggs and across the aisle were eggs hatching in a large warm incubator. The chicks look so ugly when they first come out but not very long after they are able to get up on their two feet. They are tiny and wet at first. As I jumped from place to place, Joe would find a resting place. He would smile watching me enjoy the sights. We walked over to the Petting Zoo where there were sheep, goats, deer, llamas running around freely. We both went in and were attracted to the fluffy tall llamas and got our picture taking with them which I posted on the blog. We walked through the Hayloft Exhibit. I was enticed by all the offerings but I did not want to buy something and have to tug it around plus Joe can not stand shopping since that area had no place for him to sit.

It was just about time to head to the Reliant Stadium to watch the show. Our seats were in the loft area at what would be the 45 yard line in football. We paid only $25 for each ticket which included entrance to all the exhibits, the carnival, rodeo and the Martina McBride concert. Exactly at 6:45 PM there was the Grand Entry of the Rodeo with the cowboys and cowgirls on their horses or wagons following the American and Texan Flag. No time was wasted in getting the various events going. The first one was the Calf Roping Contest where the calf is let loose, the cowboy on top of his horse with a lasso expertly putting it around the calf's neck then he hops off the horse and picks up the calf, plops it down then ties three of its legs. The winner did it in like 8.5 second. Amazing thing to see. We saw Bareback Riding which was like Bronco Riding without the saddle. How these guys stay on the bucking animals. They are strong brave men in action since I can not imagine trying to hold onto the horse with just one hand. The winner won $8000. The next event was Team Rope Contest followed by Steer Wresting which I loved watching the strength of those young men overcoming the steer. There was Bull Riding where there was a very hard time staying on the bull for anything more than a few seconds. Tough Guys! Barrel Racing was another event where there were three barrels and the individual with their horse had to ride as fast they could around each one. The two funniest events were the FFA high school boys and girls chasing the Angus calves around the stadium trying to catch them, put a rope around its neck then get it to the center of the stadium to win scholarships. It was a sight to see with some sliding off the calves. Some holding onto its tail. Funny to watch. The last precious sight was Mutton Bustin by 4 and 5 year old boys and girls. They would be on top of the sheep and grab onto its fur and ride it as long as they could. The little boy who won it got a big silver buckle as a prize plus wonderful memories. Joe and I both enjoyed the rodeo very much.

To see the stagehands set up the circular moving stage was something else. They must have gotten it all set up in less than 30 minutes before Martina McBride came on for her concert. The lights came down and the concert began. The sound system was a bit to be desired and not good for a concert so that is something they can improve on. We left the concert about 10PM and came out a different entrance than we came in so finding our lot and car was a bit of a challenge. We did not see the tram so we had to walk which was worrisome with Joe's energy being so low. Thank goodness there were color coded signs to the lots. I guess we walked about 15 minutes which is Joe's limit. He was glad that I did not listen to him as to where he thought the car was. Remembering landmarks made it where I could find the car. It worked. I suppose we got "home" about 10:30PM. We were very lucky not running into the historical traffic jams coming and going to the Rodeo.

Joe went to bed and I was not able to go to sleep till about 3AM and the alarm went off at 6AM since we had an early appointment at MDA for the pulmonary department and doctor. Joe had to do a complete pulmonary function test and a 6 minute walk before we were to see Dr Faiz. It was about 10:30 before we saw Dr Faiz. Joe said the tests were hard on him but complimented Dr Faiz on the technician who gave him the test. Joe said they put a mask on him and told him to breath in and out. When Joe would breath out, he would get into a coughing spasm and spit up globs of junk. The tech said it was caused by an obstruction in his lungs which is all the gunk. Dr Faiz went over the tests in detail. She said she was pleased with Joe's pulmonary tests where he had 95% oxygen. She showed us the graph on where he was and where it should be. Joe was about half of where he should be. She also showed us the last X-Rays and today's X-Rays and pointed what to look for. His lungs should show up black but they are cloudy from the phlegm but it was better than the last one but not significantly so. The microbiology did show a bacterial infection and the fungal petri dishes are not complete yet since it takes 4 weeks for fungi to grow. She prescribed an inhaler for Joe to use for three weeks as if he had asthma which we will pick up on Friday. She says that if he gets sicker, fever, and more cough to come back and see her but he would not have to come back until three months. Dr Faiz agreed with Dr Romaguera and Dr Torres on holding off the chemo until the infection clears. It would have been too dangerous.

We do not have to go back to MDA until Monday morning to see Dr Romaguera who will hopefully give us an idea what to expect next. Joe does not see Dr Torres, the Infectious Disease Doctor, until next Friday so we have Tuesday, Wednesday and Thursday off which we hope to get to Dallas and visit with some dear friends.

Dr. Romaguera attended the Mantle Cell Lymphoma Panel Conference in Washington, DC on Thursday and Friday of this week. Hopefully there were new advances in treating MCL that he hasblearned. We will ask him when we see him on Monday.

Good Night! Yee Haw!

Tuesday, March 8, 2011

3/8/11 Tests Show No Mantle Cells

Today was Fast Track Day where Joe gets his blood drawn at the 6th floor Lymphoma floor. While Joe was sitting in a row of chairs waiting for his turn, I received an e-mail from Dr. Romaguera. He stated that the bone marrow results were not fully completed yet but he spoke to the pathologist who stated that he did not see any lymphoma cells in the marrow but he did see scarring of the marrow caused by the myelofibrosis. He told Joe to keep taking the antibiotics and antifungal medicines and that he will see him next Monday after he returns from the annual Mantle Cell Lymphoma Panel Conference in Washington, D.C. Joe and I were filled with joy since the blood tests show no lymphoma, the lungs no lymphoma, the CT Scans show no lymphoma. Dr. Romaguera believes that Joe is in Complete Remission. We do not know if Dr Romaguera will want to proceed with the last two rounds of HyperCVAD-R after the infection clears and Joe has been released by Dr. Torres of Infectious Disease department. Joe and I feel that Dr Romaguera will went Joe to complete the last two rounds so we will stay in that frame of mind until we hear his blessing. With Mantle Cell Lymphoma having a complete remission does not mean you are cured. The disease is sleeping and will raise its ugly head in the future of which there is no doubt that will happen. There is no way to know how long one would stay in remission. There are patients who lasted only a few weeks and some as much as seven years. When it comes back, it will not be a surprise and we will hit it head on once again with the advice of Dr Romaguera.

At noon today we met Rick Klein for lunch at the Rotary House. Rick lives in the foothills of the Sierra Nevada Mountains. Rick has been fighting a Gastro Sarcoma cancer for the last two years. His cancer is very aggressive and he has five tumors still in his system. He has gone to the Portland Cancer Center and to Sloan Kettering where he had a total of two operations to remove the tumors but they grew back. He was in two previous clinical trials where both failed. He is now in his third clinical trial at MDACC where he takes a drug orally. It is shrinking his tumors. He has to fly to MDACC every three weeks from the Sacramento Airport in California. His wife, Cheryl, comes when he has a CT Scan which they anxiously await the results. Chemo and radiation does not work on this type of cancer. He has a positive frame of mind that he has book a cruise to the Med in August. We had a delightful interesting lunch since we had cancer in common as well as the love of travel and good wine. How did I know Rick? On our Egyptian Riverboat Cruise and Land tour, we shared a table with Fran Bartolomew and her travel friend, Chris. Over the years Fran and I have kept in touch when she told me about her dear friend's husband was being treated at MDACC also and perhaps we would meet each other. Rick and I communicated several times via e-mail and we made arrangements today to meet each other. Isn't it such a grand world we live in?

After lunch Joe and I headed back to the 6th floor Lymphoma Clinic to meet with one of the Physician's Assistants who was perplexed as to why Joe was there since he has not had chemo since January. She gave us a copy of Joe's blood tests where Joe's White Blood Cells still are very high at 62.7 but 89% of the white blood cells are neutrophils. Joe's platelets continue to fall from 88 four days ago to 62 today. The great news is that Joe's Red Blood Cells (3.85), Hemogloblin (11.6) and Hematocrit (35.9) are at their highest levels since April 2010. Each blood test they get better and better. If only we could get the White Blood Cells down and the platelets up but it is the Myelofibrosis raising its nasty head.

After we got back "home" and were resting, I received a phone call from Holli Baker who also has Mantle Cell Lymphoma who relapsed from remission in October 2010 after a year and a half of remission. MDACC has been searching since October for a stem cell match for her. They found one today with a 9 out of 10 match. Her voice was joyous and I was joyous with her. I was so happy for her that I was grinning from ear to ear. Tomorrow she starts chemo again to get her back into remission then a few weeks after that, they will do the allo stem cell transplant. She will have to stay in the hospital for 30 days will the transplant takes hold and her immune system builds up. Even though she lives only 45 minutes away from MDACC, after the transplant she will have to live within 5 minutes of the hospital. She is searching for a place and has a real good lead that specializes in housing stem cell transplants. I am so excited for Hollie and her husband, Johnny. It will be hard on them but this is the light at the end of the tunnel in beating down Mantle Cell Lymphoma.

Tomorrow Joe and I will be attending the Houston Livestock and Rodeo Show. After much research, I know that we will enjoy it to the fullest. I will take photos and post them. Martina McBride is the headliner who will do her show after the rodeo at Reliant Stadium. What a fun day Joe and I will have!

Till the Buffalo Roam,

Sunday, March 6, 2011


Good Evening Everyone!

On Wednesday evening we picked up Randy and Angela Meador for dinner at the Rotary House which is directly across the street from MD Anderson Cancer Center. Randy is a 5 year Mantle Cell Lymphoma Survivor. We met via the ACOR on line support site for Mantle Cell Lymphoma which is the same way that I met Holli Baker at MDACC. It is amazing how we started talking like we had known each other for many years which is a real blessing of modern technology of the internet. Remarkably Randy has had three Stem Cell Transplants whose experiences could make a whole spell bounding book. He has been in remission since May 2010 after a Allo Stem Cell Transplant. He looks so healthy and happy. Angela had her own health issues that were terrifying which happened the same time Randy was in MDACC getting a transplant. She had heart issues that would have scared the heck out of me. Imagine the caregiver in one hospital and the MCL husband in another. How stressful was that for the both of them! Another time Angela's Mom who was 92 years old had kidney failure. Since Randy was doing great, she flew out to be with her Mom which turned out to be for several months. Thank God, their son and daughter took turns being with Randy who had to have a caregiver with him while waiting for his transplant to graft and grow.

We had dinner at an amazing cafeteria called Cleburne'ss on Bissonnet which is not that far from the Texas Medical Center Complex which was a favorite of the Meadors. Thank Goodness they warned us that the helpings were huge. Huge was not correct. They were GIGANTIC! Joe and I shared fresh roasted turkey, dressing, potatoes and gravy. It was fabulous tasting, I am sure that Joe and I will visit that place again since it is the BEST cafeteria that I ever had. Since we were still there near closing time, the staff was giving out free dessert. The dessert at Cleburne's is so large that it can easily feed four people. The four of us had a vigorous conversation that was informative and so interesting. It is so wonderful to be able to meet people whom you communicate on line and meet them in person. We are glued together with the same journey of fighting the Mantle Cell Lymphoma.

Early Thursday morning Joe had a draw for a blood test. We killed time for an hour and a half at Starbucks over at the Rotary House located on the Pedestrian Bridge. I read the paper and checked the emails. It was neat watching the medical staff come to work via the staff parking garage. We saw Goley, Dr Romaguera (reading his blackberry) and the ENT nurse pass by.

At 8:30 we headed back over the bridge back to MDACC to the Bone Marrow Biopsy department. Joe waited for about 30 minutes before he was called to the back for the procedure. Joe said there are two people to do the procedure. The tech gave him a shot of lanocaine (sic) to numb his hip. The first jab did not get any marrow so she moved it slightly and got a good specimen. She would give the other tech the marrow which she would smeared on about 12 slides. Joe walked out like nothing happened. He is so amazing that he can get this done without conscious sedation. There is no way that I could do that. We were both very tired when we got back to the studio apartment so we both crashed and did not wake up till 2PM.

Friday afternoon we took Max over to Memorial Park and stayed for about an hour. We just sat at the picnic table and enjoyed the sunshine and gentle breeze. Joe just was not up to walking Max was able to explore but he kept us in his eyesight. Joe is spitting up the nasty mucous in his lungs using Mucinex which a RN had recommended. He thinks the cough is getting better. I pray that it really is.

I drove around the area near our studio and we saw so many luscious homes with manicured gardens. On Yahoo news there was a story listing the ten most expensive neighborhoods in the USA. It was no surprise to me that this area is number 7 on the list.

Saturday turned out to be rainy and very windy so we postponed our day trip to Galveston which was a great idea since it rained 2.5 inches there that day. We decided that we would visit the Houston Natural Sciences Museum. Parking was not bad with finding a pot on the street and put coins in the meter that would give us an hour. We walked around the building and there was a parking garage attached to the museum. There was a guard there who asked us where we were going. He reluctantly told us that the museum was closed since there was to be a Grand Gala that night. Phooey! We got back in the car and headed down Museum Row and went to see the Medical and Health Sciences Museum. It was really geared to grade school patrons but it was well done but not very interesting to adults. Even the 4-D movie was poor quality. We have been spoiled by 3D movies and the amazing 4D movie at Stone Mountain Park near our home.

Our next event was to see the movie, "The Fighter" at Regal Theaters. I had a free movie award ticket. The movie was terrific. Joe and I stayed interested the entire time. I could see why Christian Bale and Melissa Leo won Best Supporting Role Oscars. It is a true story that will leave you floored on the family dynamics. Go see it but no kids.

Saturday night we had dinner at Frank's Chop House on Westheimer. My rib eye steak was served perfectly the way I love it which is Pittsburgh style. The steak was charred on the outside and medium inside with it being very juicy and tasty. The broccoli was served crunchy which I hate particular when I told the waiter I wanted them soft but it did not matter since the steak was the feast. Joe had fried gulf shrimp and oysters which he ate pretty good.

Sunday we had planned to go to church at St Martin's Episcopal Church at 11:15 AM. When we were driving around exploring neighborhoods we saw this magnificent Gothic Cathedral, we wanted to see the inside of it so what better way than to attend the service. One does not see grand new cathedrals like this anymore. It was so beautiful with manicured lawns and pray areas. The stained glass windows were spectacular. My dear high school buddy, Stephanie Gasior, would gaze at these art pieces with awe. Stephanie is an excellent stained glass artist in West Virgina. The service is very traditional with a huge choir all dressed in white and black cloths who paraded up the long aisle to the choir stands in back of the altar. The Altar had a very large and tall hand carved intricate wooden separator where the choir was behind and the altar was in front. The sermon pulpit was also hand carved and another piece of great artistry. There is a bunch of kneeling so thankfully the kneel planks had very soft cushions. Today was World Communion Sunday so communion was held at the altar where one kneel down and open your palms to receive the communion wafer then dip the wafer in the wine. I believe they used real wine since it sure tasted like real red wine. I goofed by putting the wafer in my mouth after I received it then I realized the congregation was dipping it in the chalice. Whoops! I tried to take the wafer out of my mouth as graciously as possible and I slightly dipped the wafer into the chalice. I hope God has a sense of humor.

After church we headed to Kenny and Ziggy's Deli where we split a chicken salad sandwich and some creamy delectable macaroni salad which is the best I have had in 35 years. The sky was bright blue and the temperatures in the 60's so I drove to Galveston which is about 55 miles from our studio apartment. You should see the line of oil refineries at Texas City on Galveston Bay. It is quite a complex of huge gas or oil retaining tanks. There was a long train with oil cars that seem to last forever. Crossing the Bay takes one to Galveston Island. By the time we packed the children's Mardi Gras Parade was just ending. Lots of families smiling everywhere. There were people actually sunbathing on the beach with bikinis. To our amazement there were people swimming in the Gulf of Mexico. They must be from Canada or Alaska. We walked out on one of the many stone piers. We enjoyed people watching. So many people and kids came over to pet Max and they all asked first. One guy put a strand of beads on Max. It was so cute. There is a picture of Max on the blog over to the right with his beads. So many kids had 50 to 100 beads wrapped around their necks from the parade throwing them out to the crowd. Joe enjoyed felt so great since he escaped the confines of our studio and got in the open fresh air. He was one happy guy and that made Bonnie, one happy wife.

Tomorrow is a rest day with no medical appointments until Tuesday which is great. On Wednesday we plan on going to the Rodeo when the crowds are usually less. It will be an interesting experience for both Joe and me.

This morning I read the sad news that Karl has passed away that morning. Karl has Myelofibrosis which is the other incurable bone marrow disease that Joe has. Karl got to a point where his platelets could not recover. He could no longer breathe. Karl held on till his son and daughter were there till he passed away. He got his wish that he would not die alone. His kids were there with him when he took his last breaths. Karl gave a very hard fight against this insidious disease. Karl kept helping and educating people until he could breathe no more. Lord, please grant Karl his angel winds and bring peace to his children. I will miss Karl's warmth and his giving nature. The MPD on line community were with him during his last days on this earth. Karl, you taught us so much and you taught us how it was for you when you were dying. You broke our hearts and so many of us shed tears for you, a man we never met in person. We were there holding you in our hearts and will continue to do so. God bless Karl. Grant him everlasting peace and love of our Savior .

Peace be with you.


Wednesday, March 2, 2011

3/2/11 Hold Your Horses!

Springtime in Houston is just lovely. The warm temperature along with gentle breeze makes one swoon as you step outside into the fresh air. Since our appointment will Dr. Romaguera was not till 3:30 PM we decided to go to Memorial Park with Max. No forest trails for us today after our last adventure where we had no idea where we were and walked what seemed like forever! We stayed on the perimeter of the Park where the jogging/walking paths are quite wide about 10 feet of clear well packed dirt. There were so many people enjoying the gorgeous day. On the other side of the road was a bike path which is paved which was also shared with line skaters. Our goal was to walk 60 minutes. Joe would have to take three breaks of a few minutes each to sit on a bench to rest a bit. I cut the walk to 50 minutes since I could see that he was at his limit. For the last 10 or so days Joe's appetite has decreased by two-thirds so his body does not have the fuel to walk very far. I am proud of him for trying and pushing himself. He loves walking with Max and me while getting some wonderful fresh air.

Goley Richardson came and retrieved us from the Lymphoma waiting room which had very few patients and caregivers in it today. Goley had her left arm in a sling. Last week she was in an automobile accident with her Explorer with one of the monster Pick up Trucks that Texans love and drive like maniacs. Thankfully she has just dropped her daughter at ballet and heading home and BANG! She broke her clavicle in several places and had a huge gash in the back of her head that is being held together with staples. She will need surgery to repair some of the damage. Goley asked the 100 questions on how are you doing today! She answered several questions for us but she says to ask Romaguera also.

As usual Dr Romaguera greeted us both joyfully with that kind concerned look of his. He says that he got Dr Torres' report that he advises to hold off chemotherapy for another two weeks on Joe. He reiterated that Torres thought Joe had a fungal infection. Romaguera stated if Torres says to not to go forward with chemo then one should not. He stated that Torres is not a cautious type who in most cases he tells Romaguera to go ahead with chemo on the patients he refers. Romaguera concurs that it could be fatal if Joe started chemo again before the infection clears. Five percent of chemo patients die from infections.

We discussed Joe's consistently elevated White Blood Cells with most of them being Neutrophils. He believes that the reason they are staying high is because of Joe's other incurable disease, myelofibrosis. He measured Joe's spleen and it decreased slightly from 18 cm to 16 cm. At least it is not getting bigger. He also believes the enlarged spleen is from the myelofibrosis. Romaguera said that he was more concern over the therapy period that Joe's spleen would rupture but thankfully it did not. He says the spleen is doing the work of the bone marrow that is scarred. I brought to his attention that Joe's platelets took a huge drop from 180 to 86 in two weeks. He expressed concern about that and said that we need to investigate the cause of it. Romaguera said it could be a lab error so he would send us to the second floor Diagnostic Lab for a blood tests and a urinalysis since I also expressed concerned that his blood urea nitrogen and creatinine levels were both high. I had also asked him about the three immumoglobulin levels being low. He said that is true with patients undergoing chemo and not to be concerned about it unless Joe were to have re-occurring pneumonia episodes. Romaguera told us that we should not leave Houston until he finds out why the platelets went down so fast. If the CBC test was correct on the platelets yesterday, he would want Joe to have bone marrow biopsy. He told us to stay put till he calls us. He also advised us that none of the numerous tests showed any lymphoma anywhere and holding off for two months is not going to put Joe in jeopardy of going backwards in fighting the Mantle Cell Lymphoma. He will discuss Joe's blood counts with Dr Torres to see if any of the three infection fighting drugs he prescribed would cause any of the blood counts to be abnormal. So as of right now we are staying put because we trust Dr Romaguera's assessment.

As Joe was getting his lab tests drawn, I went up to the 1oth floor pharmacy to pick up the drugs that were called in yesterday that we needed refills on. Joe finished up the lab draws at about 5:30PM when we went up to the 8th floor to the Infusion Clinic. When I changed Joe's dressing today around his PICC line, I noticed the stitches had come loose. During the classes back in October they told us to come back if the stitches came loose. Since it was late in the day, there was not many people waiting so we were able to get in there quickly. The male RN was a sweetheart and recommended that I go to the front desk and ask them to order new PICC kits for me since the ones Emory uses are harder to use. He said that I needed to do it quickly since the medical supply room would be closing in 10 minutes. So I got the order from the front desk and headed to the first floor to get the medical supplies. Again since it was late in the afternoon, there was only one person in front of me so it was handled quickly. I was back up on the 8th floor as the nurse was giving new stitches on Joe's arm to hold the PICC line in place. Joe bled quite a bit so that means the low platelet count of 86 from yesterday is correct thus Romaguera will be scheduling Joe a Bone Marrow Aspiration to find out what is really going on in his bone marrow. The nurse told me what to watch out for tonight on the bandages and to flush the lines again later on tonight.

We did not get back to the studio apartment till 7:45PM. Joe was totally exhausted that he could not keep his eyes open and kept having jerking movements while sitting on the couch as he was falling asleep. It is a bit nerve racking for me to watch the jerking since I am so afraid that he will go into a seizure. I convinced him to go to bed where he would be more comfortable and that I would wake him up at 11PM CST to give him his important evening medicines. I changed the two plugs on his PICC line and flushed them. Thankfully his bandages were not bloody.

So here we are still in Houston, we listen to the messages that were given to us. Although we would love to be home even for a few weeks, it may not be in the cards. I just will have to figure a way to escape that is not too hard on Joe's stamina. Right now he is sound asleep on the bed with Max laying at the foot of the bed next to his buddy. It is so sweet to see.

Thank you all for the continued prayers and kind thoughts. You are all wonderful and have given me the strength to see this through. Praise be to the Lord and may He watch over you and your loved ones. May He comfort you in the time of need.