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.

Ciao!
Bonnie