Monday, May 30, 2011


Thursday was Joe's regular fast track visit at MDA and on that day his platelets were at 98. Joe had a horrible time sleeping Thursday night since his cough became chronic thus hardly getting any sleep. Early Friday morning he told me that he was coughing so hard that he got a nose bleed which took 3 hours to stop. As he laid in bed, I called and left messages for his Infectious Disease department and the Lymphoma Department. When I got no return calls, I told Joe that we were going to Walk-In to the clinics and have him examined. He stated he did not want to wake me up last night since I needed my rest since he knew that I would have insisted on going to the Emergency Room. He wanted to stop by Panera Bread but I shot that down since it was the start of the three day Memorial Day Weekend and if we did not get to the clinics early, there would be little staff on duty thus great waits.

His regular Infectious Disease nurse saw him and stated that the doctors were gone and asked what he wanted to do. I told her that Joe was told to come in if his cough got worse and it sure did. He had pneumonia previously so I thought that it was prudent to come in. She told us to go to his regular Lymphoma Department and get assistance there. It sounded like she was passing the buck to me. She stated that if the Lymphoma department wanted him to see an Infectious Disease doctor then she would page one or send us to the ER.

Off we went to the Lymphoma Department where the receptionist quizzed me whether we had an appointment. When I did the sign in form, I wrote that smack on there so I knew where she was heading. I told her that Joe had a serious cough resurgence last night that it caused his nose to bleed for three hours. It would mean his platelets were low and he needed a strong cough suppressant so he could get some sleep. She said there was only one doctor on the floor but she would call the RN. We waited for a bit and one of the RNs came out and I told her the same story. She went back and spoke to the doctor and they scheduled him immediately for a blood test and to come back in one hour for a PRN to review it with us. We went to lunch at the Rotary House which was an escape from the hospital setting as well as far from cafeteria food. When we came back an hour later, we waited another hour to see the PRN. She was the same PRN who saw him the day before. She was concerned that his platelets has dropped by 50% in one day which could mean his platelets would be in the 20's on Saturday. She listened to his lungs and there was a significant difference in the sound with more wheezing and bubbling sounds. She sent us over to get a XRay of his lungs and also gave Joe a prescription for some codeine medicine along with an inhaler to help him breathe better. She also scheduled him for an additional blood test for Saturday and to see a PA in the Sarcoma department since this is where one goes when it is the weekend or a holiday. I picked up Joe's prescriptions at the 2nd floor pharmacy and made sure both drugs were in the bag. The inhaler cost a bunch more than I had expected but at this point I did not care. I was just glad I had it.

Friday night Joe slept like a baby after taking the meds and using the inhaler. He was so happy to get such a good night's sleep and could have slept some more even though he went to bed at 9:15PM. Now we head to the 2nd floor Diagnostic Center for his 8:30 AM appointment to get Joe's blood drawn and tested and it was jammed packed with people. UGH. They are efficient there so it was not too bad of a wait and was done at 9:30AM. We went to the 9th floor Sarcoma Department to wait to see a PRN or PA. It was so crowded in both waiting rooms so we knew it would be a lonnnnnnnng wait and it was. The PA who saw us was one we had met with before in the Lymphoma Department we think. He was running around with his head cut off since there was so many patients. He told us Joe's platelets were down to 23 and the doctor's instructions on the PC stated he would need a platelet transfusion of 6 units. He had to put the order in on the system and the receptionist would let us know what time it would be. The appointment was not until 2:30PM so we were going to have lunch at the cafeteria but there was nothing there that seemed appetizing so we went back over to the Rotary House. Joe liked that so very much. The same waitress waited on us that we had the other day so it was quite pleasant. We head over to the 2nd floor ATC Tranfusion Unit and it was packed. Joe's name was called at 4:00 and we both followed the Vital Sign person through the door. When I turned around a second later, Joe was no longer standing beside me. He had gotten dizzy as he was entering the door and someone caught him and put him down in a chair. He had been waiting such a long time and stood up too quickly. Good Grief! His bald head was sweating profusely but he was coherent. The platelets got done about 5:15PM. We got back to the hotel about 5:45 and just stayed there. It had been a long day. About 8PM Joe requested Chinese food so I ordered some on line from PF Chang's since it is only about 5 minutes from our hotel. We got some Hot and Sour Soup, spring rolls and two mini desserts. It was perfect. After eating Joe took his meds and headed back to bed early again. I reminded him that we were suppose to drive to Victoria, Texas, two hours south of Houston, to go to Whitney Wilkinson's church, and be treated to lunch at her parents home. If he was too tired or weak, that he could stay "home" and rest. He said let's see how he felt in the morning since he really wanted to go.

Sunday morning I got up at 7:15AM and Joe got up with me. We stopped at Panera Bread and said he was so tired that he decided that it was best for him to get more sleep and rest all day and for me to go to Victoria by myself. I dropped him off at the hotel front door and off I headed to Victoria on US59 South which will someday be Interstate 69. I turned on my radio loudly and cruised on down the flat ranch and farm lands of Texas. I had no issues in finding The First Presbytertian Church on Navarro Street in Victoria since Whitney had told me that it wason the main street of Victoria. The church looked like it had been there for a very long time. I came in through the side entrance of the church so I was able to walk though the whole church where people stopped me to introduced themselves. I got to the church lobby where I had waited only a few minutes till Whitney and her parents, Bonnie (YES!) and Bill Wilkinson, came in. Bonnie saw me first and gave me a big welcoming hug. Whitney's Mom is quite attractive and well dressed and so young looking. I can see where Whitney got her good looks and personality from. Her Dad was equally gracious in greeting me and Whitney and I gave each other a huge hug and lots of big happy smiles. They introduced me to so many people that it was a blur but they were all so friendly. Their minister's name is Kathryn who gave an inspirational sermon. She was such a good speaker using no microphone. The end of the service ended with a triumphant organ music arrangement of patriotic songs with the last one being the "Star Spangled Banner" which the congregation sang together. Quite appropriate to remember the brave men and women who lost their lives fighting for the freedoms we enjoy as well as remembering their families. Wonderful! Whitney took some photos of their new gorgeous shiny black grand piano which they had purchased for only $10,000 from a church that had closed. Whitney's Mom took photos on my iPhone of Whitney and me together. Eastminster Presbyterian Church back home in Stone Mountain would be delighted to see Whitney and me together at her home church. I followed Whitney home from church to her parent's home about 10 minutes away. As soon as I walked into the home, I was greeted with another warm hug and hello from Bonnie and Bill along with a cool glass of Sangria! I loved the large Great Room in their home decorated in a Western decor with some prized animal heads on the wall where two of them looked as if they were from Africa. The animals were imported from Africa to central Texas Hill Country to save the species and they have flourished. The patio and back yard look lush even though Texas is in a serious drought. In the middle if the yard is the "Beach House". You have to ask Whitney why they call it that. It was so cool looking. There are two rooms. On the right is a greenhouse and on the left is Bill's office. On the outside wall there were all kinds of farm and garden tools attached in a perfect pattern. Each tool had a story from the past. It was hot and very windy or we would have had lunch outside. How could I forget and not tell you about Whitney's white ball of affectionate curly hair doggy. She adores Whitney and is so sweet that she sat between Whitney and me on the couch while we grabbed for hours. She got scratched and petted from both sides. In heaven! We had lunch in kitchen where there was a bay window looking out into the back yard. We had yummy crispy Tacos for lunch and their own hot homemade spicy picante sauce. The dishes were colorful and matched the tablecloth. What a perfect meal to engage in lively friendly conversation. Whitney learned new family history where her grandfather had met Pancho Villa unwillingly in Mexico while trying to eradicate hook and mouth disease.Pancho Villa let the crew of men go, thankfully! Bill showed me some extraordinary artifacts that were handed down through several generations of his family. One was an arrowhead pierced into a large spinal cord joint. Another was a petrified piece of wood made into an arrowhead which was about 6000 years old. Fascinating stuff. Bonnie told me the story of an breakfront she had restored from a severely broken down display cabinet from her ancestors when they cleaned out the home after the great grandmother died. The picture before showed it as a piece of junk where it appeared nothing could be done with it but Bonnie had a vision. It is now an incredible piece of restored furniture that will be passed along to future generations with a great story to tell. It use to keep medicine bottles and salves for the animals on the ranch. I found out from the family photos displayed on the large bookcase that Whitney and her sister are hunters. I saw a picture of Whitney who was about 14 years old with her prized deer with antlers. She shot it at their family ranch located in south Texas about 100 miles from Laredo. Who would have thought that petite cute Whitney would be a great white hunter? Not me!

Bonnie served us an amazing dessert that if I had known what was in it, I would had politely declined. It was an enchilada rolled with a can of cherry filling with a finger licking sugar cinnamon frosting with Blue Bell Vanilla Ice Cream. It is probably one of the best desserts I ever had and reminded me of peach cobbler but even better. There was no way I could guess it had cherry filling since I do not like cherry filling. I ooh and ahh it as I ate it as I raved how wonderful it was. They got a real kick out of that.

I left their home about 3:30PM to head back to Houston. Bonnie told me about a little store about halfway between Victoria and Houston where I needed to stop and walk around the store which has a gourmet fresh meat, cheese and all kinds of preservatives. She told me when I walk in the front door to look to my immediate left and buy some of the best Jalapeno Cheese Bread in the world. I found the store and I bought some of that bread.

What a great day I had with the Wilkinson family! I wish that Joe had felt better so he could have enjoyed the visit as much as I did. We will just have to come back someday and visit them again. The winds of love stretched out its arms again. Amazing Grace how sweet the sound.

I called Joe just as I entered the Houston City Limits and asked him if he would mind if I stopped at Chico's to shop their Memorial Day weekend sale. Since he said it was ok, I took a slight detour to the Chico's Outlet at Meyerland off of Interstate 610. I bought a few things and was their last customer of the day when I left at 6:15PM.

When I got to the hotel, Joe was antsy to get out of the hotel. He had slept till noon and just hung out in the room with Max and took it easy. He felt so much better and enjoyed my tale of the visit with the Wilkinsons. I got tickets on line to see The Hangover II that started at 7:05. Joe had to have popcorn so he went to the concession stand while I went searching for two seats together since the show was sold out. I waited and waited for him to come into the theater. I started to worry so I asked my seatmates to save my valuable seats while I go search my missing husband. He was not at the concession stand, not in the men's room and not any where. Oh my, I was really worried now what if he got dizzy and got sick or went into one of the 22 other theaters. I went back into the theater and was stood in front and tried to look at the stadium seating and there he was about 10 rows up sitting alone and eating his popcorn. I pointed at him to come down and come over to me. He figured out my strong hand signals that he better come quick and we were now seated together. From now on we will both enter the theater first, get our seats, then he can go to the concession stand. He has got to have his popcorn. The movie was not as funny as the first one but still pretty funny and crazy. Joe laughed out loud a bunch so that was a good thing. After the show at 9PM we headed to Chuy's for some great Mexican food that was close by. On the flatscreens in the bar was the Braves baseball game so we requested to eat there at the tall tables where the table was a breast level. It felt a bit weird for me. I had a Margarita to reward me not nagging Joe about getting lost in the theater.

Joe went right to bed since we had another early wake up call for a blood test at 7:15AM at the Diagnostic Center. We started with a bagel break at Panera Bread and got to the center right on time. Next we headed up to the 9th floor to get the results and be seen by one of the medical staff on duty. Two hours later we got called back and sure enough Joe needed platelets again since his platelets were now at a tiny "6" from 23 two days ago. The appointment for the transfusion was not until 11:30 AM. We had plenty of time to waste so we went down to the second floor where the Gazebo is and found two reclining chairs where I slept for several hours. We walked over to the ATC Transfusion waiting room at 11l30 and it was wall to wall people with people standing in the hall. Groan, another long wait. Joe got called back to a bed finally about 1;00. It felt like forever. It is freezing cold in these rooms since it is believed that patients get less nausea when it is cold. I dressed in jeans, a long sleeved top, a dress jacket and used Joe's flannel shirt and two blankets while Joe got his transfusion of 6 units of irradiated platelets in a 300ml bag. I did not know that they do not use a pump for it to infused the platelets into the veins. It is just plain good ol' gravity that makes it work. Joe was finished with his platelet infusion at 2:15PM. We headed to lunch on our side of town at a new place called The Brisket House on Woodway Drive. It is own by an Aggie. I had read a great review in one of the weekly papers that are free everywhere like Creative Loafing in Atlanta. When we got to the counter, Joe got a weird look on his face so I knew he had another dizzy spell so I sat him down and got him some food into him quickly. All he wanted was two pieces of Pecan Pie. He loved it. I had some fantastic Beef Brisket where it was slow cooked for 14 hours. The layer of fat was crispy black with great spices and the beef was tender and tasty. I liked it so much better the Goode's BBQ plus the BBQ sauce was better too.

When we got to the hotel, Joe changed into shorts and laid on the couch with his feet on my lap and I massaged his legs and feet. He fell asleep with a smile on his face. We both ended up taking a nap and woke up about 6PM. At 8PM Joe said he was hungry so we decided to get a Cheese Pizza at Barry's Pizza on Richmond Ave. It was good!

Joe has headed to bed early again since we had a medical appointment at 7:30 at MDA with the Ophthalmologist where they will test his eyes for 4 to 6 hours. When Joe had gotten an eye exam at Costco for new glasses, the examiner stated Joe had a Visual Defect. He has issues seeing things coming from the the side and below. He could not state the correct number of fingers when the MDA PA examined him in the hospital and I had stated that I would like for Joe to see an expert in eyes. So we will see one tomorrow. I sure hope that it is nothing serious. We shall find out.

Joe's next blood test is not scheduled till Thursday again but if he has any bleeding then we will go in and get his blood tested. Joe is at the nadir point after chemo and it is the same pattern as he has had in the past after HyperCVAD-R Part B. His blood counts should start to improve from hence on.

So that is it folks. Thank you for reading my blog. It has been therapeutic to me.


Tuesday, May 24, 2011

5/23/11 Last Round Done! Released!

Thankfully Joe has successfully completed round 8 of the HyperCVAD-R chemotherapy today and was released from MDA Hospital at 2:30 PM after the results of the Methrotrexate levels were under .1. There were so many times since October 11, 2010 when we did not think that Joe would be able to complete all eight rounds. To be able to type those words is a great feeling with the major milestone met. We will continue to be in Houston for the two week recovery period from the chemo followed by a whirlwind of staging tests starting on 6/6. We think that we will be home on Saturday, 11th of June, if all goes well. From our past experiences we have run into various infections that set us back or rather put us in a hold pattern. It was hard emotionally on Joe more than me since it just wanted to get over it. He is not the type of person who can handle being restricted to a hospital or hotel room. One unusual thing that happened with Joe that after the first two rounds of chemo, he refused to take showers. He would clean himself up pretty good with a washcloth and soap and always smelled good. The area that got a mess was his head and hair since he did not wash it. I suppose he thought there was so little of it so why bother. While he was in the hospital this past week, I shaved the remaining hair off his head and there was a massive amount of dead skin and crud on his scalp. I took him into the bathroom and washed his scalp for about 30 minutes until it looked sparking and shiny clean. He had no idea that it was that bad though I had I mentioned it to him many times. After awhile, I just stopped bringing it up, since it seemed I was nagging him about so much stuff such as drinking more liquids, eat all his food or some food, exercise by walking which he stopped doing. He lost so much weight the last two weeks that the dietitian wrote on his records that his weight lost over two weeks was considered "severe." She wrote that his weight was down to 156 pounds which scares the heck out of me. Joe can be quite stubborn so I have to be more creative in getting him to do the right stuff to help himself.

Last night Joe and I went up to the 17th floor Family Quiet Room to visit with Holli and Johnny Baker from Baytown, Texas. I have become friends with Holli via the ACOR.ORG on line support list for Mantle Cell Lymphoma. We have become cheerleaders and can discuss the most basic of bodily functions with out worrying about it offending any one of us. Holli had her hat on with a mask and gloves to protect her from germs. We had to pretend to hug each other from a distance since Holli's biggest enemy is infections since her immune system is zero. Her stem cell donor is from Germany and she is so grateful to that person. In a year she will find out the person's name and where they live. It took a long time for Holli to get a match so she was so excited and thrilled that a 8 out of 10 match was found. Holli has had the usual reactions such as diarrhea, nausea, lost of appetite, exhaustion, sores in her mouth and nasty blood blisters in her mouth that burst every so often. Holli is also doing a clinical trial where she got chemo before, during and after the stem cell transplant. Johnny, her husband, has been by her side and such a great caregiver and partner.

Please continue to pray for Joe that infections will stay away and that his re-staging results will show no cancer in his body so we can come home. Continue to pray for a cure for all cancers and strength for the families who are in their battles to win their war.


Saturday, May 21, 2011

5/21/11 LAST ROUND!

On 5/20 Joe started the day with visits to Infectious Disease to determine whether his infections were under control so he could do his last round of HyperCVAD-R. We both sat on the edge of our chairs with nervous anticipation. They cleared him! It was such a huge relief since Joe was not in any mood for any more postponements.

The afternoon of 5/20 Joe had his blood tests followed by the very important visit with Dr. Romaguera. Joe was cleared to enter MDACC for his last round that very day. There were some very important items to work out with all the departments that has worked on Joe with his medications. The Pharm-D advised us that one of Joe's antibiotics interferes with the toxicity of methrotrexare. The pharmacist recommended some substitutions that had to approved by Infectious Disease, There were some other items that were to be discontinued because of the interference with methotrexate such as 81mg of aspirin, B12 complex and I forgot what else. It took from 2Pm to 7:30pm before Joe was finally admitted to the hospital. To our approval, Joe was placed on the awesome 15th floor of the new tower where the rooms are huge and very comfortable. Joe's first IV was Rituxan that started at 11PM and ended about 4Pm. He had no issues.

Today at 11AM they started the 24 hour infusion of Methotrexate which is so very strong where there can be serious issues with the kidneys so vital signs are watched very closely. Joe had some complaints of the intermittent diarrhea again so they got a sample of it to be tested. Today was the first time that Joe complained of some burning when he urinated. So I made an intense effort to have him drink more fluids. By the evening the burning urination had ceased but they took a urine sample anyway. His darn cough continues and is a little worse than it has been. All of these complaints make me so on edge since I am so conscious of the danger of infections. I suppose that I am more on edge since we are close to closing chapters of this stage of fighting the beasts. A dietitian came around at the behest of Romaguera because of Joe's weight loss, He is now down to 162 pounds from 169 three weeks ago. She gave Joe suggestions to add more calories and some fruit such as bananas and yogurt to control the intermittent diarrhea. I could tell that he was not seriously paying attention which drives me nuts.

Here is some of Joe's counts today since I know so many people are interested in following it.

White Blood Count 19.4 (high from the neupogin shots)
Red Blood Count 5.14 (normal)
Hemoglobin 14.5 (normal)
Hematocrit 45.4(normal)
Platelets 288 (normal)
ANC 16.49(high but a good thing)
ALC .78 (low, Rituxan working)
Electrolytes all in normal range

Romaguera, the PA and pharmacist all stated that Joe;s rebound of his blood counts have been quite remarkable for a 68 year old from the MCL and MF perspective. They stated that Joe has done better than other patients in their 40's and 50's. Joe is a good example why an oncologist should review the entire physical health of the patient and not look at their age with using HyperCVAD-R.

I was happy to see tonight on the future schedule that Joe has appointments for a massive amount of tests on 6/6, 6/7. 6/8 to re-stage his disease. He has a final late afternoon visit with the Lymphoma Oncologist to see if he is ready ti be discharged from the Lymphoma Department. The long journey is getting close to ending this trip.

Praying for success and a smoother ride.

Good night!

Saturday, May 14, 2011


Even though we got to the Lymphoma Department at 8am, time seemed to drag. Every chair was taken in the hallway which is a queue to get one's blood drawn. Since it looked like a long wait, I headed down to the 2nd floor pharmacy to ask where the three antibiotics were that were missing from the order when Joe left the hospital the day before. The clerk looked it up and it turned out that those three drugs were dispensed at the 10th floor pharmacy. Now, how the heck was I suppose to know that. You would think someone would had advised me but no sirree.

There was no line at the 10th floor pharmacy when I got up there and sure enough, they had the missing important antibiotics. It seemed that no one was interested in figuring out how that happened since all the drugs were submitted by the pharmacist at the same time when we were checking out. At least the on floor pharmacist did call me back and let me know that I had picked the drugs up but had no idea was the breakdown was. I suppose I should call the Patient Advocate about it to prevent that from happening to someone else.

Joe still was not finished with the Fast Track labs by the time I got back to the Lymphoma Department. He also got his vital signs completed and his weight was 165. The guy can not seem to gain weight. Oh how I would love to have that problem! For some reason the lab results took longer than it normally does since Joe was not called back to speak with a physicians assistant until 11AM. We were antsy since we knew that a RN would be coming to our hotel to instruct me on giving Joe the IV of Cubicin as well as the supplies by noon. The physician assistants who do the visit with the patient after Fast Track do not know diddly squat about the patient's history. It is so weird to know more what to do that this person. When I saw the results of Joe's blood tests, I was so happy since the numbers looked fantastic. Here are a few of the results.

White Blood Count 6.2 (NORMAL)
Red Blood Count 5.33(NORMAL)
Hemoglobin 15.4(NORMAL)
Hematocrit 48.0(NORMAL)
Platelets 99 (Low but after chemo this is GREAT)

I recommended to the PA that Joe stop getting the Neupogin shots since his white blood counts are normal. The PA agreed. We will go back on Monday for another Fast Track and review.

We got back to the hotel about 11:30AM and waited for the RN to show. At Noon she called and stated that she would be here between 1:30 and 2PM so Joe and I went out to lunch. Of course Rosalyn, the RN, did not show up until PM. She has NO supplies or medicine with her. She was under the impression that she was to come to us for five days to administer the IV. I advised her that she was only to instruct me. She gathered up her stuff and left before I could get Applied Health Care on the phone. I was not happy since it was now 2:15PM and I knew they would tell me that it was too late to get everything done now so I was very assertive and demanding. Meanwhile a mean line of thunderstorms were about to hit Houston in about 10 minutes. I told them that we would come to them for the supplies and instruction since they were close to where were staying. After negotiating with several people, we were on way over to their office off of Richmond Avenue and Fountain View.

As we stepped out of our hotel the wind was blowing fiercely and the rain came down in sheets sideways. I mumbled a few choice words under my breath. I suppose I was peeved because of the screw up in the drugs the day before, the long wait in Lymphoma, then waiting some more for the RN to show and then she rudely leaves. Heck, it is my husband's life at stake here and they needed to get their act together.

It was still pouring rain sideways when I finally found the building which was strange how it was located. I dropped Joe under the overhang so he would not get wet. I parked the car and got wet. When I got to where Joe was, he said he guy standing outside stated that Applied Healthcare would bring the supplied down to us as Joe was dialing their number. I just ignored them both and found a door open and went up to the 2nd floor and found the office and BING, rang the bell for some attention. They treated is very nicely up there as I got the instructions and supplies. It would be much easier to do this IV rather than the ERAXIS that I had done previously. Hey, I found a blessing. We finished it all up by 4PM then we both crashed and took a long nap.

On Friday we went to Memorial Park with Max and got out our folding chairs at a unpopulated area of the picnic grounds where Max could explore without us worrying about him bothering anyone else. We sat under the shady oaks as Max did some business and sniffed his way around the area. We dropped Max back at the hotel as we decided to go to the movies to see "Bridesmaids." It was hysterical. I could tell Joe was not thrilled with the movie since he kept looking at this watch every 5 minutes. I ignored him since I needed that good therapeutic hardy laughing. Melissa McCarthy stole the movie but Kristen Whig was quite good.

Since we skipped lunch, we decided on having LINNER at Pappa's Burgers after the movie which I love. Yummy burgers to eat as well as some great fresh delectable french fries. We stayed at the hotel wand watched Friday Night Lights which is such a great show. It did not disappoint us as usual.

Saturday we slept late again. Joe is really sleeping long these days between 12-13 hours a night. I stay up about 3 hours later so it all works out. I took Max for a walk outside the hotel. It was "Be a Tourist Day," We drove down Interstate 45 south to Galveston. What magnificent large stately old Victorian homes there are in the Strand area of Galveston. We have got to come back here to drive all through the back streets to see these colorful beauties. Today Joe wanted to ride the Ferry from Galveston to Balboa. There was a long line of cars and trucks to ride the Ferry. I suppose we waited for about 45 minutes before we were parked on the ferry. It was done very orderly and efficient. To our total surprise the ferry was FREE! Well, of course, it is at taxpayers expense and needed in that area. The ride over to Balboa Peninsula took maybe 30 minutes on the warm clear day. Joe really enjoyed it tremendously. He was looking forward to a seafood lunch but alas the 50 mile peninsula had no places to eat that looked appetizing or clean. The area was big for people who seriously loved to fish, There was beach home on huge stilts and we could see where previous hurricanes had made their mark. We also saw lots of oil pumps some which were totally rusted and many still pumping away. In the far distance on the Gulf of Mexico we could see several large oil rigs. The beaches currently are inundated with huge batches of seaweed which happens rarely. We saw it on the nightly news the night before. It will take hundreds of trucks to get the beaches presentable again. Yuck!

We decided to eat LINNER again in Houston near our hotel at Villlagio's on San Felipe. We got there at 4:40Pm and groaned when we saw the sign on the door stated they opened at 5PM. Blessedly, the owner invited us in and we had our choice of seating so we sat in a booth by the window. Oh, how we both enjoyed our meals, It did help that we were hungry. This is the place that has the BEST Tomato Basil Soup that I have ever had and of course I had a cup.

We were back in our hotel room by 6PM and settle in for the night. I must admit that we were both pretty, we were very bored. Joe hit the sack at 10PM. I can not possibly go to bed that early so I decided to write on the blog. Now it is almost midnight so I put the time to use very wisely.

Ciao, my family and friends. Good night,Sweet Dreams!

Wednesday, May 11, 2011


Joe texted me that Romaquera was releasing Joe from the hospital today.Whoopee! I texted then called Joe. He did not know his counts but they must be okay. The Fellow with Romaguera cautioned that many pieces had to fit together for Joe to be released since a pharmacy person would have to go over medications and get new ones submitted/ The Case worker would have to contact Caremark and Applied Home Health Care to coordinate the delivery and instructions of the antibiotic IV that I would have to give Joe for five days. As the day went on, we knew that it would be in the evening that Joe would be released so the medical staff decided that they should do the IV of the antibiotic starting at 6PM and would end at 7PM since it could not be arranged to have the IV and supplies delivered this afternoon to our hotel. It was fine with us since we were both so happy that Joe was getting released today which was not expected by us.

When I got to the hospital room with Joe's bag of current meds the pharmacist was going over the meds one by one. Some will be omitted and destroyed and new ones in their place plus some new ones. It is quite something to keep up with all of it. I highly recommend a pill organizer that covers four times a day or it would be impossible to keep it all straight. As that was being called in, I made arrangements with Applied Home Healthcare to deliver the IV meds and supplies by noon Thursday. I went down to the 2nd floor pharmacy to put up the called in drugs and also get 2 new boxes of heparin used to flush Joe's CVC lines daily. The IV antibiotic that will be given for 5 days is called DAPTOmycin 400mg, after heta is done Joe will take Doxcycline 100mg twice a day for 7 days. In addition to those antibiotics Joe will take AZITHromycin 500 mg once a day for two months as well as Ethambutol 1200mg also once a day for 2 months. The later two are for the stubborn germ mycobacterium gordonae in his lungs. There are lots of other drugs he takes also besides the antibiotics. He will take Neupogin for just three days since his counts are on the upswing.

By the time I got to Joe's room again, a copy of the blood test was in. Here are a few of the counts.

White Blood Cells 2.0 (low) bu much improved from day before
Red Blood Cells 4.99 (normal)
Hemoglobin 14.4 (normal)
Hematocrit 44.5 (normal)
Platelets 69 (low but stable)
Absolute Neutrophil .89 (low but above ,5 which allowed Joe's release from hospital)

Joe finished his IV of antibiotics at 7PM and we left the room at 7:30PM. Joe just glowed with happiness. He strutted down the hall like John Travolta. Joe requested to eat at CHUYS Mexican Restaurant which was jammed pack with people but luckily we had a corner booth away from other people. It was finally raining in Houston after 57 days of none and Joe enjoyed the rain also.

We go to the studio at about 9PM. I started to get the drugs together to put them in the organizer. There were three that had to be thrown away. After an hour of setting it up, I realized that the three new antibiotics were missing. Pharmacy never gave them to me. Since he pharmacy closed at 8PM and it was now 10PM, there was nothing that I could do. I even paged the on floor pharmacist and she told me that she did call it in but since it was so late, I would have to wait till tomorrow to get it resolved. I was peeved that the drugs were not given since Joe was suppose to take a dose tonight of each of them. If I had not meretriciously went over the pills I had and the list from the hospital, I would have not realized they were missing. A lesson learned for all of us caregivers.

Joe fell asleep right away at 10:15PM. He is always s exhausted when he comes home after an in hospital visit. I am beat too but I know so many of you are anxious to know what happens so thus you got this blog tonight.

Tomorrow we have an 8AM appointment with FastTrack for a blood draw then a visit with Lymphoma medical staff. I will get the drug situation straight and try to find out who caused the goof.

Thank you for your heartfelt prayers since Joe is on the road to recovery and "home."


Tuesday, May 10, 2011

5/10/11 New CVC line and counts

Good Evening!

Today was a busy day for Joe where a new CVC dual lumen line was put into his left arm. The CVC had two people come to Joe's room early today to put it in. Joe says that it does not hurt when it is inserted. They put a tube into a vein in his arm and it does up to his shoulder, along the shoulder blade then down to above the heart. It is an amazing thing that they are able to do such a thing. After putting the new one in, Joe has to be taken down to XRay on the 2nd floor to get a picture of it to assure that it is placed correctly without any kinks or wrapping. Once they are assured that it is okay then the old one can be removed.

We found out there was an issue with the placement when the RN came into Joe's room with an armful of heparin syringes which she told us that is was for a Power Flush but she did not tell us why. The CVC team came back in and they told us the CVC line about the heart was twisted and they are hoping that the Power Flush would untwist it. Each time they entered the flush, Joe had to lean over and take a deep breath. Next Joe would have to get another XRay on the 2nd floor to see if the Power Flush worked and untwisted the lines. Joe said the X-Ray was finished at 6:10 PM and he had to wait for hospital transportation to take him back to the room. They should let me take him and bring him back since it would be way more efficient. Waiting for transportation for another tests takes way longer than the tests themselves.

Joe's RN Melissa told us that the procedure worked and that a CVC team member would be up to take out the old line. She set up all the new IV's to the new line. Joe complained of a headache the last two days and they give him a half of a little pill that stops the headache in minutes. In the meantime I decided to order some Tex Mex dinner from Pappasitos that was only 2 miles away from the hospital. While I was gone to pick the food order up, the CVC team rook out Joe's old line which did not heart at all. They told Joe that he could order a pain pill since his left arm may be sore from the new entry point of the line.

Dr. Romaguera made his rounds about 1PM today. He was pleased to see that Joe's Absolute Neutrophil count went from zero yesterday to 110 today. It needs to be at 500 before Joe can be released. Joe thanked him for calling in the Infectious Disease expert and that we were both impressed with how the doctors work together flawlessly at MDACC. Dr R stated that Joe's last scheduled chemotherapy for 5/19 will be postponed. He could not tell us for how long. He says we need to take each day as it comes. It is important that the infection be gone 100%. Joe will be ordered home care for antibiotic IV's that I would administer after he gets release. MDA, the Case Manager and Applied Health Care would work all of that out for us as they did previously when Joe need home IVs of ERAXIS which was for the believed fungal infection. I told Dr R to make sure Joe fully understands why there would be a postponement since he gets depressed when that happens. Joe understood and was fine with it.

Joe decided to take them up on the pain pill. He was floating away to the twilight zone as the late news came on so I came back "home". It is hot and muggy in Houston where the city has not had rain for 57 days. There is an "exceptional" drought happening in Texas which is causing massive wildfires that are excelled by the strong winds.

Some of Joe's other counts are as follows:
White Blood Cell Count .7 (low)
Red Blood Cell Count 4.85 (normal)
Hemogloblin 13.8 (slightly low)
Hematocrit 43 (normal)
Platelets 63 (low)

With chemo the WBC and Platelets are expected to drop. The good news is that the platelets did not stop to an extreme low level as they have done in the past. The Red Blood, Hemogloblin, Hematocrit are excellent. Joe has not needed any transfusions of Red Blood Cells or Platelets with this round of chemo as he has had on each of the others in the past. We do have some positive things happening in spite of the serious infections.

Joe is getting the full alphabet of antibiotics of which nearly all of them I never heard of before. I can not even pronounce their names correctly. What a blessing that there are so many antibiotics available.

Good Night!

5/9/11 DANGER!!!!

Joe was admitted into MDACC in the new high rise on the 15th floor at 1AM on Saturday morning if I have kept the days straight. It is truly hard to know what day things happen on when they are happening so fast and you are up over 24 hours straight. I needed to keep alert to assure Joe's treatment was on target and that his regular medication stayed on tract. It is not an easy thing to do when his medications are changing daily for one reason or the other. The second ER visit was a better experience and with better staff than the first ER visit that day.

Joe's room number at MDACC is G1553 where the entire floor is the Lymphoma floor. The room is not quite a large as Joe's last room but still nice. It just has a weirder layout but it still has the two flat screen TV's, a sofa bed, desk with chair, a lounge rocking chair and a decent view of the Texas Medical Center. I ended up staying till about 3:00 AM since I had to get Joe settled in and answered all the status questions and go over his drug list. The nurse on duty was pleased that I gave her so much detail and made her job so much easier. They immediately placed sodium cloride IV as well as a powerful antibiotic called vancomycin which will be given once a day. All the blood tests were done once again from the arm as well as from the two PICC lines to determine what bug he has picked up. Joe's neutrophil count was a very tiny 30, 60 and 20 the first 3 times they tested the blood. His platelets continue to drop which is all a normal reaction after getting chemo.

Sunday morning, Mother's Day, I was up at 9AM to take a shower then take Max to the dog park. I made it to the 11AM church service at St Philips Presbyterian Church on San Felipe Blvd. The children of the congregation gave the service including the sermon. It was delightful. After church I drove over to Randall's Supermarket to get a flower arrangement for my Chinese friend, Yan, who is working on her doctorate in Public Health at the Texas Medical Center. Her beautiful baby. Claire, is over in China staying with Yan's very loving Mom and Dad until Yan finishes her doctorate. She wants to go back to China and help her countryman. Yan's Mom stayed with Yan and Hang for about 9 months during her last months of pregnancy then until Christmas 2010 when all of them went home to China but little Claire stayed with Grandma and Grandpa. With both of us away from our family and children we decided to have Mother's Day Lunch together. It was just perfect since I needed a pleasurable break from the caregiver role. After we both exchanged gifts, we went to Champs to have lunch which we both enjoyed and caught up on family news. Each time I meet with Yan, she educates me more about Chinese culture. In China, mothers who just given birth, are expected to have complete bed rest for a full month after giving birth. The only thing she gets up for is to go the the bathroom. In China they do not have access to Facebook but they have their own Social Network.

After lunch we both made our separate ways. At the hotel my oldest son, Keith, sent me an amazing arrangement of a dozen long stemmed white perfect roses with a lovely note. Michael, my youngest, sent me the most perfect Mother's Day card with a touching statement. Keith's girlfriend, Jennifer, sent me the best book ever called "Women, A Celebration of Strength." In the package was three red hats to honor all the different hats I wear in life. It was a very thoughtful kind gift.

I did not make it to the hospital till about 3;30PM. Joe has texted me to pick him up a Roast Beef Sandwich and chips from Brown Bad Deli. Boy, he enjoyed eating it, big time. Dr Romaguera made his rounds late Sunday afternoon and we discussed Joe's situation. He stated that the initial cultures came back as gram positive cocci bacteria. Joe would have to be fever free for 48 hours and his neutrophil count must reach 500 (it was 30 at that time) before he could be released. It was the hospital's policy. Good! It is just the place Joe needs to be since if he were at the hotel, he would insist on going out for meals and doing something no matter how I would fuss. At the hospital he could be protected as much as possible. I stayed at the hospital until about 10:30 PM and headed back to the hotel to get some rest. I was so exhausted. It had all caught up with me. I was in bed at 11:30 PM and I did not wake up till 11:30 AM on Monday morning.

The day starts with getting a shower than taking Max to the Dog Park. We left the park at about 1:30 PM. Joe texted me to pick up a Big Max Meal for him so I decided that I would eat something from McDonalds also. On the text he told me Romaguera had stopped by and increased the dosage of Neupogin to 480cc from 300cc since Joe's absolute neutrophil count (ANC) was now ZERO and his platelets were down to 64. Tuesday is Joe's expected nadir point but the ANC can not go negative but we expect the platelets to drop to its lowest point on Tuesday before it starts to rebound. There were a few times that we had to get medications straighten out since we knew better and they listened to us and had paged Romaguera for clarification. They also had Joe getting only 1000 kg of Keppra once a day when it was suppose to be 1500 units twice a day. So errors can happen even at MDA. One must be on guard all the time and insist on the RN's contacting the doctor to get it corrected.

At 6:30PM Monday night, the Infectious Disease Expert, Dr Ashita, came to talk to Joe and me. He explained that Joe had a bacteria infection in his PICC (CVC) lines and that it was at such a high level of 1000 that he recommended that the line be removed and a new one place on the left arm. It will be done on Tuesday since it was now after hours. He also explained that the AVELOX (moxofloxcin) had to be stopped since it was diluting the effect of the seizure medicine, Keppra. They believed it was the reason he had the seizure Friday/Saturdat night. He stated he was replacing his current antibiotics with ones they use for TB patients but he assured us that Joe did not have TB. To keep all of the meds straight is so complex. Some meds will have to be thrown out and new ones and additional ones for the bacteria infection and separate ones for the rare mycobacterium gordonae. He said Joe was a very rare case with rare diseases and infections. A rare jewel my hubby is, has been proven medically.

I left the hospital tonight at 10:30PM since Joe was ready to call it a night.

I am so thankful to God for directing me to get Joe to the ER when he got the fever. I am thankful for the terrific care the MDA gives the patient. I honestly do not think that Joe would have gotten the care he needed at Emory since the doctors from the various departments do not work closely together with an urgency. I am thankful for Dr Romaguera calling in for the expert help from the Infectious Disease Department. I am thankful for all the prayers that Joe and I are getting from such a large Prayer Army.

Good night. It's time to hit the hay.

Saturday, May 7, 2011

5/6/11 Two Trips to the ER in the same day

On Friday 2:15AM Joe had a seizure and I took him to the MDACC ER. They are not sure what caused it but the neurologist upped his seizure medicine by 50%. A bunch of tests were done. The ER doc thought maybe the diarrhea on Wednesday diluted the anti seizure medicine from his blood stream Or one of the antibiotics he takes for the weird germ in his lungs caused a seizure. His blood tests were good except for the extreme low white blood count that is an effect from the chemo. Joe was released from the ER at 3:30pm.

I gave Joe a shot of Neupogin at 8pm tonight. As we sat on the couch his hands and arms were hot to my touch so I took his temperature 3 times and it was 101.12F. Discharge instructions tell us to take him to the ER if his temp is 100.5 or more. Joe did not want to go since he was so tired but he knew I would not take no for an answer. We arrived at the ER and checked in at 10pm. The ER doctor was very thorough and said that Joe needs to be admitted to the hospital since infections are so dangerous for him. We are waiting for the admissions order and a room. All of this is fluid situation as I type this.

It is good for him to get into a hospital room where it is quiet so he can sleep.


Wednesday, May 4, 2011

5/5/11 Devil's Gone

While Joe was receiving Doxorubicin (the Red Devil) at MDACC on Sunday evening, May 1, we were watching one of my favorite shows on Sunday nights called "Brothers and Sisters." The program was interrupted with a News Bulletin about 9:45 Pm CST and I grabbed Joe's thigh since it was highly unusual to see a bulletin come over at that hour on a Sunday night. When the news alert come on, I was happy to hear Osama bin Laden, the real live Devil, was dead. I felt kind of strange almost immediately as to why I was "happy" about another human being's death. I pray that God understands and forgives me for the gladness and relief. This person killed thousands of innocents on our America soil who were defenseless. This person has killed many of people of Islam faith also. This person had woman and children strapped with explosives to kill people in markets and public places. This person meets our maker, God, who will send him to Hell to meet the other mass murderers like Saddam, Hitler, Stalin, Mussolini, to name just a few. The Navy Seals, who should remain anonymous, are true heroes as well as the many men and woman who have died fighting evil and had and continue to do so. God bless the USA. May God protect us from evil. May God forgive us for we know not what we do nor sometimes what we should do. I agree with President Obama that the gruesome death photos of Osama should not be publish for maybe 100 years. The crazies would use the photos as a recruitment too. I do not care if they do not think he is dead.

Joe's session of Part A of HyperCVAD-R has gone as well as expected. From reading Joe's medical records on line at MDACC, Dr. Romaguera stated that he was reducing the strength of the chemo by one level (whatever that means). Dr R wrote that the reason he was decreasing the dose was because Joe was already in complete remission and because Joe had the "serious" bout of infection. It is strange that I never thought what Joe had, was that serious. I now know that was the wrong thought. The reason I never thought of it as serious was because Joe never had a fever nor hospitalized for the infection.

On Monday I came with my Brown Bag lunch of a Roast Beef Sandwich and some chips. Joe had asked for a bite of my sandwich so I pulled off a bite for him which he thoroughly enjoyed. Stephanie, Joe's RN for the day shift walked in to check on Joe. She asked Joe what he ate for lunch. He tells her he had a Roast Beef Sandwich. I asked Joe what Roast Beef Sandwich? He said the one from Brown Bad Deli. I stated, " You have got to be kidding me Joe. You had a bite and you call that lunch?" I started laughing like crazy. Joe stated OK, OK , go get me a Chick Fillet Sandwich and Fries from the Cafeteria. I replied "I am not going to trek 16 floors, walk halfway down the first floor and get you a meal that you are not going to eat." I did not go but I continued to laugh at his so called lunch! The nurses could hear me laughing all through the floor. When Stephanie left the room., Joe rolled his eyes at me and stated he just told her that, to keep her off his case on eating. Joe covers up what he really eats and especially what he drinks. The only way the medical staff would get close to the right information is from me. Well, that is what I thought until I opened my eyes and realized that Joe was not telling me the accurate facts either.

Sometime I have failed to write about, is Joe's memory and thought process is so very poor. This is true both on short term and long term memory. He has confusion and his thought process is poor. Memory has never been a strong point with Joe but now it is really serious. I have got to talk to the doctor about it as well as his bouts with depression. I did bring it up to Goley Richardson and who did a good job in getting Joe to finally admit that he had it, Believe me that was a major milestone for Joe to admit it. Goley left it as we will keep tabs on it so I will bring it up again as well as the serious chemobrain issues. MDACC actually has a medical department that deals with Chemobrain thus it is a real issue.

Joe's chemo finished up on Tuesday at 10:30AM. There was a discrepancy on the discharge orders on the dosage of Neupogin as well as the number of days Joe will take it. I got the dosage corrected and the discharge RN advised me when Joe goes for his followup on Friday that the doctor will make the decision on the Neupogin number of days. The reason I brought this to their attention is that Joe white blood counts jumps up extremely quickly and high after a few shots. I will bring it up again since I know better. Caremark Mail Order Specialty Pharmacy has to ship the Neupogin to us in a refrigerated box. I requested them only to send is 5 pre-filled syringes since I do not want to receive more than what was needed plus it is so expensive. Before we left the hospital, we had to stop by the second floor pharmacy to pick up additional drugs and a refill of Keppra. Caremark told the MDACC the the Keppra was a maintenance drug and that if we filed it there instead of mail order, it would cost us $548.00. I refused to pay that price so after I left the pharmacy I called Caremark who would mail the refill to the hotel where we are staying for a total of $18.00. Joe had to use the restroom again for a BM. I started to notice two things about Joe's bathroom habits. He was having at least 3 BMs a day when he normally has one. He could be having more than that since he has been been telling me the whole truth. When he urinates, it takes him a lot longer than it used to. I also asked Joe how his BM's were and he told me that they were normal and not runny. Hmmmmm. I decided that I would have to press him some more on that issue.

Joe requested that we eat pizza for lunch at Luigi's in Midtown where they have a wonderful outside patio. I walked in and when I turned around Joe was not behind me. Some other guys were waiting, told me that he went to the restroom but then Joe finally walked through the door. He looked weird and I asked him if he was OK. He told me that he was tripped but he was fine. I asked him if he fell, but he said that he had just tripped. We enjoyed the medium cheese crispy crust tangy tomato sauce pizza. Joe also enjoyed a delicious side salad with raspberry vinaigrette which he said was fantastic. Joe insists on eating salads though we both know that it is not a good idea when his immune system is suppressed.

When we went back to the car, I could see why Joe had "tripped". The pavement had a little ridge to it. It was in the car when he showed me that he cut his arm when he FELL! I was not a happy woman since he did not tell me the truth that he FELL. He claimed he told me that he tripped and that was the same thing. No, it is NOT.

When we got back to the hotel, I cleaned his wound up very carefully and bandaged it. I explained to Joe that with his immune system being suppressed that cutting himself and not taking care of it right away could be quite dangerous. What am I going to do to save Joe from himself! It is wearing me out.

One would have thought Joe would have been happy to be out of the hospital but I started to see the very first night back at the hotel that he was not talking and his lips were pursed thin. Uh Oh! I could see depression seeping back into his brain. Perhaps he was just tired after the hectic pace of checking out of the hospital since that has been an historical happening with Joe. I started to read my notes from the blog and found that he will be like this until probably next week. I remind him that he normally gets real tired and weak after a chemo treatment and that he should rest and rest some more and not push it. We discuss that he did great with this last chemo and it was the first time where he did not need blood or platelet transfusion. I remind him that he has only one more chemo week to go and then we should we home free. He goes to bed about 10:15 pm CST which I thought was good for him. The day Joe got out of the hospital felt like 2 days had passed. If it was tough on me, it was way tougher on Joe.

Today, Wednesday, we both got up about 9:15AM. Our first stop was the dog park for Max to do his business. I promised Joe that it would take only 15 minutes at the most and it took less. Joe was hungry so we stopped at Panera Bread on the way "home". It was there that I brought up to Joe that I thought that he was in another depression state. He actually agreed with me! He basically stated that he thought that he would never have good energy ever again. He was afraid of getting another infection. He was worried about part B of the chemo since that one was so much harder on him and he was afraid that he would not make it through it. He was afraid of the cancer. He was afraid that he would not be able to travel again. I went through each of his fears with him but with depression knowing why does not make one feel any better. I asked him at Panera Bread whether he would like to go to Memorial Park with Max and just sit outside in the fresh air. Yes, he would. Perhaps open spaces would help. When he got out of the car, he headed right to a Portajohn. It was then he finally admitted to me that he had diarrhea. We stayed at the park maybe 15 minutes when Max ran back to the car and wanted to leave so we did. On the way back home I bought some Immodium and some other essentials. Later on today, Joe was glad that I had gotten the Immodium and he had to take it 3 times. If he still has the issue tomorrow, I will call MDACC for further help. I kept filling Joe's cup with liquid since it is so important for him to drink liquids not only because of the "runs" but some the the medication he takes, it states to drink plenty of liquids. It has been a huge challenge to get liquids into Joe since he keeps saying he is full and has not room for it. One of the last things we need is for him to become dehydrated. If someone has a magic answer, how I can get Joe to drink more liquids please let me know. If someone has a magic answer, how I can get Joe to tell me the truth. My ESP and women's intuition can only take me so far.

Today Joe had an appointment to get his eyes examined at COSTCO so he could get new glasses. The ones he has are over four years old and scratched up badly. I was braced for the results of the eye exam since I was truly worried that Joe may be getting cataracts since so many people who have gone through chemo have gotten them; I have not told Joe that could happen since I did not want him to worry any more than he had to. It would make him even more depressed if the had them. Praise God that he did not have them. God probably knew that Joe could not handle any more that he already had on his shoulders.

Before we left Costco, Joe had to use the bathroom again for a long period of time. I even texted him to see if he was OK since he would had not been pleased with me knocking on the men's restroom door to do a shout out to him. I was hard to remain patient.

Tomorrow is a full day of rest with no appointments. Joe wants to get the laundry one and thankfully the hotel has good washroom facilities.

God is with us and keeps carrying us though all the bumps along this journey.