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.

Ciao!