4/11/11 Best Blood Counts in 14 years! FINALLY! Catching up!

At 6AM Joe was shaking me backing and forth trying to wake me up for his 7:50AM appointment at MD Anderson Cancer Center (MDACC). Considering that I had only gotten one hour of sleep, I was not a happy woman. Joe had set the time way too early. Wisely he decided to let me sleep another hour. Alas, it was not to be since once you are awake and know you have to get up shortly, one cannot fall back asleep. We both got moving at 6:30AM with packing our stuff, taking medicine, brushing our teeth and getting dressed. The Courtyard Shuttle service picked us up at 7:10AM and we were signing at the 2nd floor Diagnostic Testing Center at 7:25. It was a wonderful surprise for the X-Ray technician to call Joe back within two minutes. Joe was back in the waiting area with me within 15 minutes. His next appointment was not until 8:00 in the same department to get his blood drawn. The blood draw technician also called Joe back early thus we were finished with Diagnostic Testing by 8AM. What a contrast to Winship at Emory where one consistently waits for at least an hour. MDACC is a well oiled machine and people are so productive. You are always greeted with a smile and a hello even as you walk down a hallway whenever a hospital employee passes.

Since Joe’s next appointment was not until 10AM in the Infectious Disease Department, we decided to take a cat nap at the third floor lounge looking out huge windows to the fountain and gardens below and facing the Rotary House. Joe made himself very comfortable in a well cushioned chair as I lay down on the couch to sleep. Sleep, I did! I felt so much better after that.

Up to the 6^th Floor Infectious Disease department we went and arrived on time. As I usually do, I sign Joe in and fill in the questionnaire which one is given in each department. Again Joe was called back within a minute for his vital signs which was 127/72, pulse 91, weight 167.5 with his shoes on. Again, another pleasant surprise after the vital signs, Joe and I were ushered into the exam room. First the nurse asks Joe 100 questions and writes the answers down then we had some small friendly chat. Within 5 minutes Dr Torres' Senior Fellow came in to examine Joe and gave us a copy of his morning blood test. Both he and Dr Torres had reviewed his X-Rays. He was happy to tell us that the pneumonia was cleared up. It was determined that the malbranchea fungi were a non-contaminant and were not the cause of his pneumonia. After further growth in the Petri dishes, another germ came up. It was called Mycobacterium Gordonae which they now feel was the cause of his pneumonia and nagging cough. The Fellow stated that it is similar to bacteria. The difference is that the mycobacterium has a hard shell with positive cocci in rod shapes. It is considered a contaminant and with patients who have their immune system compromised can have it develop into pneumonia. The germ is very hard to get rid of because of its hard outer layer. Joe was to continue to take Avelox (moxifloxacin) and they added another antibiotic called Clarithromycin. The doctor told Joe that he may have to take these antibiotics for maybe a year or more. Wow, this booger is tough to kill. The fellow conferred with Dr. Torres who agreed that Joe could start chemotherapy once again. We were very happy with this news since we could continue to fight the monster called Mantle Cell Lymphoma. I finally had a chance to review Joe’s blood test and I was astonished and very happy to see that Joe’s counts were in the normal range. In fact, I had not seen Joe’s blood test look this good in over 14 years! You would not even think that Joe had Myelofibrosis with these great counts. Here are most important ones.

4/6/11...……………………………RANGE……………RESULT……..

WHITE BLOOD COUNT……… (4-11)…………..( 5.5) ……. NORMAL

RED BLOOD COUNT…………..(4.5-6)…………..(5.22……..NORMAL

HEMOGLOBIN……………………(14-18)………….(15.8)…….NORMAL

HEMATOCRIT…………………….(40-54)………….(51.0)…….NORMAL

PLATELETS………………………….(140-440)……..(221)……..NORMAL

NEUTROPHIL ABSOLUTE CT.(1.7-7.3)………..(2.93)…….NORMAL

LYMPHOCYTE ABSOLUTE CT.(1-4.80)………..(1.05)……NORMAL

MONOCYTE ABSOLUTE CT…..(.08-.70)………(.63)……..NORMAL

EOSINOPHIL ABSOLUTE CT…..(.04-.40)……..(.65)……..HIGH

BASOPHIL ABSOLUTE CT………(0-.10)…………(.20)……..HIGH

IMM GRANULOCYTE CT……….(0-.04)…………(.03)…….NORMAL

PHOSPHORUS SERUM………….(2.5-4.5)………(3.4)…….NORMAL

POTASSIUM SERUM……………...(3.5-5)………..(4.0)…….NORMAL

MAGNESIUM SERUM…………….(1.8-2.9)……..(2.1)…….NORMAL

LACTATE DEHYDROGENASE….(313-618)…….(735)……HIGH

Okay everyone, let’s all cheer and give thanks to God for these amazing results. Joe and I will enjoy this moment of joy although we know the reality of his two incurable diseases that only God could heal with a miracle. YEA! YEA! YEA! Good News for Joe and Bonnie. Happiness breaks through the dark storm clouds since October 18, 2010.

Now back to the moment! We left the Infectious Disease Department with smiles on our faces and a lilt to our steps at 11:15. Joe had only 25 minutes to eat lunch since he was scheduled for a CT scan at 2:40PM at the Radiology Outpatient Lab across the street from the Main Building. One cannot eat for three hours prior to the CT scan. We ate lunch in the main cafeteria at MDACC where one has many choices to choose from. At 12:30 we walked our way to across the street by the scenic route. In front of the Main Building of MDACC there are colorful gardens, sculptures and fountains. The area to my right had all different colors of roses in bloom. The large sculpture in front of me appeared to be a large flame – the light of HOPE! To the left was a very pretty fountain where I took Joe’s pictures which I will post to the blog later. There were all kinds of colorful annuals that looked like a sea of color. Benches are placed so one could escape the hospital setting and be able to smell the roses. Wealthy donors generously donated all of this to the patients, caregivers and personnel of MDACC. Thank you for their generosity.

I checked Joe into the Radiology Lab and answered the usual questionnaire for him. Joe would be there for hours with prepping for the exam by drinking the dreaded enhanced fortified “milk shakes.” Joe knew that I wanted to go see one of our Myelofibrosis friend, Alan Caruthers, who had his massive 38 cm spleen removed three weeks ago. Alan was only supposed to be in the hospital for a week. Joe was concerned about me getting upset when I saw Alan. So what, if I get upset, I will get over it but Alan needed to know that people cared about him and his dear caregiver wife, Laura.

I headed back across the street and up to the fifth floor in the purple wing where Alan was. Before I went up the elevator, I stopped by the gift shop to get a little something. I bought them a multi-colored Tiffany Nightlight that had the word HOPE on it. During out previous stay I had purchased one for Joe and me since I was so fond of it. I have it located in our guest bathroom downstairs. We all needed HOPE for a cure. I also bought one of those small Whitman Chocolate candy boxes since we all know that chocolate makes one feel better. Right?

I lightly tapped on Alan’s door and opened it. He had a big smile when he saw me and told me to come in even though he was consulting with one of his doctors. His coloring looked good. He still has all his hair and nicely trimmed beard. Unfortunately, Laura had gone shopping since she needed some time alone and give herself some TLC. Good for Laura! Laura has spent the entire three weeks staying with Alan and sleeping in the same room as he. Alan stated that Laura slept pretty well but he had a very difficult time sleeping because of high anxiety and fear. He had come close to dying several times in the last three weeks. His internal organs that had been smashed by his massive 20 pound spleen had trouble working. He has massive amounts of fluid buildup in his abdomen where the spleen used to be. The medical staff had to insert a drainage tube and the amount of fluid that drained out was massive. He has a feeding tube since he could not hold down food. He said that he was so sick. Today was the first day that he was allowed to drink clear fluids and he had eaten the best Jell-O ever. We were able to laugh and pray together thanking God for Alan still being here, thanking God for MDACC and their amazing compassionate staff and brilliant doctors. We prayed for Alan to be healed well enough to go home at the end of the week if he continued to improve. We prayed for Laura and her health and wellbeing. Laura had pictures of their newly handsome adopted son and family members on the wall as well as messages of HOPE, FAITH and LOVE. I gave him our gifts. How appropriate was the night light with the word HOPE on it! God works in so many ways that shows his amazing love of us all. Both Alan and Laura miss their son so much. He is being well cared for by Laura’s Mom back home in Waco but they talk with each other every day. I told Alan that he has been in the prayers and thoughts of everyone in the MPD/MPN support community. I spent an hour with Alan before I headed back to Joe. (Updated Note: Yeah! Alan went home on that Friday!)

Joe was still sipping on the “fortified milk shake” and was immediately called back to the exam area as I had arrived at 2:15PM. Perfect timing! It seemed like forever that Joe was back there and I was really getting concerned and antsy at about 3:45PM. I went up to the desk to see if there was anything was wrong. She assured me that all was well and that they took good care of their patients. She called back to the exam room and said that Joe just finished about four minutes ago and that he would be out shortly. Sure enough Joe walked out at 4PM which was our appointment time with Dr. Romaguera (R) in the Lymphoma Department. We quickly walked across the street up to the 6^th floor in the Main Building. As normal, I signed Joe in and answered the questionnaire. Joe and I were called back to the exam room where we were greeted by our wonderful PA, Goley Richardson. The last time we were there Goley had been in a car accident and broke her clavicle bone and she was in a sling. She was to have an operation where they put her back together again with some screws and fusion. She had been back a week and we were happy to see her. Goley takes such good care of us. She told us that she has listened to the results of the CT scan and between that, the X-Rays and blood tests showed no lymphoma. She was also amazed at Joe’s rebounding blood counts. Now, dear father figure, Dr. Romaguera comes in with a smile and spends quite a bit of time with us. He told us that he wanted to take a very close look at all the CT scans of the lymph nodes in the groin area. The CT stated in each one that the nodes had shrunk a small amount but never stated specific measurements so he could make a firm decision on future chemotherapy. He believes that there could be a good chance that Joe is already in total remission and perhaps he would not need the last parts of HyperCVAD-R, part A and B. He would back with us in a few days with a plan but said we should plan to come back to MDACC on 4/27. Dr. R was also very pleased with the results of the blood tests. I asked him about Rituxan Maintenance for MCL but he was not keen on it. The clinical results of Rituxan Maintenance are not real clear in whether it would assist in stalling the re-occurrence of MCL. He was not closed minded about it but he wanted to investigate a bit more to make s decision on what is next for Joe. We left his office very happy.

Our plane was to leave Hobby Airport at 7:25PM. It was 5:30PM when we stepped out to the transportation pick up area. I called the Super Shuttle 800 phone number and I was on hold what seemed forever. We were outside when a person finally was on the other end. The Customer Service Representative was not helpful at all. She said I should have called 24 hours for a reservation for 4:30PM. Well, I could not do that since I had no idea when we would be finished with the doctor. In fact, we only just got out of the doctor’s office at 5:30. I saw the Blue Shuttle Bus drive pass when she kept saying to me that they could not guarantee that they would get us to our flight in time. After she said that to me three times, I was totally flustered so I decided to forget our prepaid voucher and take a taxi. We hopped into a taxi and he delivered us to the airport at 6:15PM in plenty of time to go through security and grab a bite to eat. Joe gave the cab driver a fat tip.

Our Air Tran flight left Hobby Airport on time and in fact we arrived in Atlanta at 10PM which was 30 minutes before our scheduled arrival. We arrived in our home at 11PM. We were both exhausted. I told Joe not to try to wake me up and let me sleep. We were in bed at midnight.

I did not wake up till Noon on Thursday. I slept sounding for 12 incredible restful hours. Joe had gotten up at 10:30 so he also got a good night’s rest. Joe’s voice was raspy. Oh my, he had a sore throat. Damn I had forgotten to bring the masks for the flights. Something else to watch closely! Joe drove over to Northlake where we had a nice lunch at JASON’S DELI and we purchased a gift certificate for the Silbermans for watching Max for us. We appreciated their help so much. Lauren texted me how Max was doing regularly and send me photos of Max with the kids and finding a comfortable place to lie down. He was a very good dog they said. Max was very happy to see me and he ran out to the truck waiting to hop in and go home. Homeward Bound!

Our downed tree was still blocking the road when we got home. As I slept away like Sleeping Beauty, Joe called the county and they assured him that they would come to remove it. When we came back with Max, there was a road clearing crew of about 10 men who was working very hard to remove the tree and the debris. They also picked up all the branches and large limbs that were placed on one of our neighbors across the street. I was so thankful that I went over to each man and thanked them personally for such good work as well as shaking their hands. There is still about 20 feet of the trunk sticking up along with the massive root system. Our original tree man would come out Monday to remove it.(He did not show.)

Friday was designated by me as Bonnie Caregiver’s Day. I woke up at 9AM via an alarm, took a long hot shower. I left Joe asleep in bed and told him to take it easy and rest all day. I stopped by the Bagel Shop before heading to get my hair cut which was way overdue. After getting my hair done, I drove over to Massage Envy to enjoy a 90 minute Swedish massage. For lunch, there was a Le Madeline’s across the street where I enjoyed a French Dip Sandwich and a cup of Tomato Basil Soup. I got home about 3PM and Joe was resting on the couch. He had walked a mile at the track in Lilburn. I headed upstairs with Max and took a luxurious nap till 5PM.

When I went outside with Max at 5:30PM, I noticed some cables down on the ground along the Lesters front yard and down the street. Greg Bennett told me that the moving van had taken it down about an hour and half ago. I called AT&T repair and the rep told him that it would be fixed by TUESDAY evening. Now that is RIDICULOUS! We have neither land phones lines nor DSL. The rep advised me that I was the only one on Musket Court to report the outage and that to get more priority that others would have to call the outage also. So, I started down the street knocking on all my neighbors’ doors asking them if they used AT&T and to call the 800 repair line so we could get more priority. It turns out 50% of the homes use COMCAST for phone and DSL. The neighbors who called told AT&T that if they had to wait till Tuesday, they would be switching their business to COMCAST. Yes, COMCAST was working. It turned out to be a positive experience since I met some of our “new” neighbors and got to know them. Nancy Lester gave me a tour of their storm damage where the tree tore huge holes in their roof and the rain damage that went all the way down to the basement. They were having visitors arrive on Saturday for a week and both Nancy and Charlie were exhausted from the clean up. They were handling it so graciously. Since I am without my DSL, I am typing the blog on WORD. When we get our DSL back, I will copy and paste it. I wonder when AT&T will show up. I hope that it is sooner rather than later. At least Joe and I still have our iPhones with internet capabilities but one cannot do a blog on it. You would go blind doing it and your fingers would cramp up as well as taking forever. (DSL fixed late Monday, 4/11. afternoon.)

Tonight we had dinner at OUTBACK near our home and ate at the bar saw we could watch the home opener of the Braves against the Phillies. I am pleased to say we won.

We are caught up folks! Your prayers have worked wonders. Please continue them for Joe’s continued remission and no more chemo for a long time.

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Continued on 4/12/11 at Midnight plus 2

I noticed that Joe's appetite decreased again on Friday so I decided to watch him closely to make sure that it was not a trend. It was a trend so it is milkshake and rich dessert time for Joe. Tonight we had Mexican and he ate about 80% of his meal which is the best he has done since last Thursday. His cough was non productive and seemed to be coughing more. When he cough, it sounded more down deep and gurgling. As I asked him some questions, I found out that he had stopped taking the Mucinex for no reason other than he just did!!!Well, I took care of that and out it in his pull organizer and I already can tell the difference today since he is coughing less. Why do guys do that? Denial, I suppose.

Today I had my appointment with my shoulder doctor, Dr Mason. Joe was with me as I told him my shoulder was 60% better. He have me three choices.

1. Get another shot in the shoulder joint since it worked 60% .

2. Get PRP Therapy which is Platelet Rich Plasma that health insurance will not cover. It means $1000 out of our pocket. I read the brochure that patients need one to three PRP injections 4-6 weeks apart. I bet it is $1000 each time. Anyone ever have this? If you have, please let me know of your experience.

3. Operate on the partial torn rotator cuff which has a long recovery period.

I picked option One then if that fails I will do Option 3. What do you think?

After that appointment I contacted Winship at Emory about scheduling Joe for a CBC then a pheb if his HCT is over 48. His last HCT count at MDACC last Wednesday was 51. This time they called me and did a conference call with the scheduler, infusion department and me. We made sure we got the appointment straight. He will get it down Wednesday, 4/13 at 7:30 AM.

Next I had to call Dr Mason's secretary to set up the sonogram and shot in my shoulder. The next appointment was also Wednesday, 4/13 at 9:05AM. Ugh! Luckily Winship and the Orthopedic Office is not very far from each other. I will drop off Joe at Winship and stay with him till I see the blood test to assure that they get it right! I will drive over to Executive Park, have my proceedure then head back and get Joe. Whew!

On Tuesday I am finally doing to my dentist to clean my teeth since I had to put it off since October. I bet my mouth is a mess. During the day the stress causes me to somehow suck in my mouth which causes sores on my tongue which hurt like heck.I do not realize that I am doing it. It is amazing how stress affects you physically.

Thursday, I also finally have my Medicare Physical which had to be postponed several times because of being in Houston and all other kinds of reasons. I pray that it goes well since I just can not have something serious. I will tell her about the stress reactions and the acid reflux and more recently, anxiety.

I am happy to day the AT&T finally fixed the down phone line this evening so now we have DSL and our land line working.

The tree and its massive root is still in our front yard. Joe called the tree man and he stated that he would be here on Wednesday. Unfortunately there is another storm front coming in tonight. Oh, please let there me no more excitement. Enough Already.

Please pray for one of my very dear friends, Ray Buff. He advised me today that he has pancreatic cancer, stage 2. He was diagnosed last October and has done chemo as well as radiation. The tumor has shrunk enough where Kennestone Hospital will operate on Wednesday, 4/13. The operation will take 8 long hours. The tumor is very close to his aorta. He will be in intensive care for 5 days then the hospital for a least another week.

Please pray for a cure for all cancers. It has been a tough 2 weeks where several support lists friends passed away after a very courageous and valiant fight. It can happen so quickly by catching a dreaded infection that would be nothing but a minor cold to a healthy person. Maybe that is why I am over stressed right now. My heart is sad. My heart aches for the caregiver and their families. The battle is so very hard and one can not let their defenses down.

Ciao!

CIAO!