Saturday, April 30, 2011


We arrive in Houston on Tuesday, 4/26. The entire drive from Cape San Blas to Baton Rouge to Houston was very windy. I had commented that it was a bad omen for the Deep South since I knew that a storm was brewing. Little did I know that it would be so destructive and take so many lives as well as disrupting the lives of thousands. The pictures of the destruction is mind boggling to me. Two of our church members families had children attending college in Alabama with one living in a home off the University of Alabama campus in Tuscaloosa. You already know the force that hit that town. Mollie, who is to graduate in May, thankfully was saved by hiding in the bathroom of a house while the house was destroyed around her. We give thanks to God that she was spared but still saddened by those who lost their lives. God has something special in store for Mollie.

We checked into the same Homestead Studio Suites in Houston near the Galleria where we have stayed for extended times twice before. The staff knows Joe, Max and me well so we were greeted with big welcoming smiles and they gave us the same studio suite again which takes care of our needs.

On Wednesday Joe's appointments started at 2PM with a blood test then followed with an appointment with Dr. Romaguera in the Lymphoma department. We saw Goley first, followed by a "fellow" then Dr R who greeted us warmly. Joe's blood counts have been amazingly stable. The big negative has been his high hematocrit which was 56 that day. I agreed with Dr R that that chemo would drop it. What is great about this time around, it that Joe's platelets are in the normal range at 266. Even though Dr R says Joe is in remission, he still wants to Joe to complete the last two scheduled rounds of chemo to attempt to keep him in remission longer. I am for that.

We had about an hour to waste while Joe's paperwork for chemo and admission was completed. We decided to eat at the Rotary House across the street from M D Anderson Cancer Center. It is similar to a Marriott Hotel so the services are quite good. Dinner was enjoyable in the nice, quiet surroundings.

Joe was admitted to the new 22 story High Rise on the 16th floor of MD Anderson about 7PM. It is truly state of the art and very nice. It makes the hospital stay much easier for Joe with the wide hallways, colorful artwork, shiny hardwood floors, huge nicely decorated patient rooms, the best of up to date technology in and outside the hospital room. They also thought of family members and created two comfortable family rooms. One has a large flat screen TV, vending machines and wonderful views of Houston. The other family room is the quiet room. It is a very nice considerate touch for caregivers and their families. I am going to put a few pictures of the new High Rise of MDACC.

I stay with Joe till about 10:30 PM then I go back to the hotel to take care of Max and sleep. Joe started with the monoclonal antibody, Rituxan, at 11PM and finished it at 4AM with no reactions. Joe says he slept right through it. At 6 AM Thursday the nurse started the IV of Cyclophosamide that is given for 3 hours every 12 hours for three days. To protect the kidneys Mesna is also given via IV continuously for three days. He is also given Saline Solution continuously to keep him hydrated.

This same routine was also done on Friday. He is comfortable and has no adverse reactions to the chemo. I go back to the hospital each day by 2PM and stay till 10:30 PM. I try to sleep late, take a hot shower, take Max to the Dog Park since he is still scared of doing his business around the hotel with all the strange noises that he is not fond of.

Joe's blood tests continue to amaze me as he undergoes chemo. Today his platelets were at 240 (normal range). Thankfully his hematocrit has dropped to a much safer level at 51.3. Joe's white blood count did not drop real low yet but it will. Joe is happy that I am there to keep him company and to keep track what is going on.

I am thankful to God for taking care of Joe and making him comfortable as he receives chemo.

Good night!

Sunday, April 24, 2011

4/24/11 Cape San Blas Escape

Tonight is our last night of our escape with our family at Cape San Blas. Every night I watched the sunset with a glass of wine in my hand. Every night Joe stayed in the condo. If he cracked one smile the entire time, I think I missed it. I did my best not to let him spoil these few days and most of the time I succeeded. I did bring it to his attention that he looked 100% miserable and that it looked like he wanted to croak any minute. Watching him like that is stressful to me and I wish he could pretend. The only things he does is eat, sleep and watch TV in this glorious pristine place. He has slept and ate well. There is no reason for his blues.

Cape San Blas is very isolated. There are no high rises, tacky souvenir places, restaurants or amusements. The peninsula has plenty of beach houses that are for sale or rent. Many of them are painted in pastels and have colored tin roofs. There are places to park to get over the dunes to the sugar white sand beaches. Shell hunting is the amusement park and riding the ocean waves.. During in season, one can snorkel for bay scallops in the bay. The sea grass and sparkling waters beacon everyone. The weather has truly been perfect for the days that we have spent here. We enjoyed eating at various seaside shacks in the open air where the specialty was FRESH seafood. The oysters and shrimp were divine and they came in hundreds of different ways.

Being with my sons and my two granddaughters made me a happy person in spite of Mr. Grim tight thin lip Joe. We enjoyed pulling off the road in the out of the way places to explore the beach and tidal pools. The tidal pools were interesting with lots of hermit crabs, live conch, horseshoe crabs, fish, snails, snakes and imagination. Lots of sweat was created exploring St Joseph's Peninsula State Park where if you bring it in, you must bring it out. The sand dunes were huge there and only a few people venture all the way to the end. Billions of shells are a reward for the exhausting trek.

We also enjoyed BBQ burgers and drinking wine along laughing at each other. Mike rented a two movies from Redbox where one was terrible. We are watching the last one in a few minutes to ease down to rest. I am happy to saw that I got three amazing night's sleep.

Tomorrow we head to Baton Rouge which is our rest point for the night on our way to Houston.

God will lead us on the following leg of our journey with Mantle Cell Lymphoma. I sure hope He gives me more strength because I am getting really tired. I will do my best to take it one day at a time and one challenge at a time. It is the key.

Good-bye Cape San Blas. You were a blessing to our family. I am not sure about Joe though. It is what it is.


Wednesday, April 20, 2011


It has been while since I updated my blog. The month at home in Atlanta has been excessively busy cramming everything in, that needs to be done in a short period of time before we head back to Houston for Joe's last two rounds of chemotherapy. I am happy to state that all our goals were accomplished over the last month with me catching upon a bounty of doctor and dental visits. There were some bumps in the road, as usual, that we just seem to handle somehow by tackling the task at hand. God has truly been our Co-Pilot.

Joe's hematocrit remains high even after three phlebotomies thus far. His last HCT count was at 56.4 on Monday. Before we leave Atlanta on Wednesday, 4/20, Joe will have one more phlebotomy. I pray that the HCT will go down since there is a danger of a stroke if we do not get it down. Joe is doing okay with the usual complaint of feeling tired but honestly, I think he does amazingly well, especially with all he has been through and still going through. He still has the lingering cough and has a cold sore between his nostril and upper lip. He has been taking medication for it and also for shingles in case that is what it is. He had a minor excision done on his neck onTuesday by his local hematologist, Dr. Brazas, in Decatur, Georgia. Joe had a squamous growth on his neck. Joe has a history of basal and squamous cell growths for the last 7 years or maybe more. It is hard to keep track any more.

Joe's hair is so handsome and cool to me. It is now about an inch long at the most and so soft as well as being a nice color gray. He will lose it all over again when he does the rounds of chemo but that is no big thing for a man. I love him no matter what he looks like. He is still too thin and has not gained any weight. He eats but he needs to eat more. I keep tabs on it.

I have gained a ridiculous and embarrassing amount of weight where I have lost control over. You would think that I could control it but it is easier said than done over what has happened in the last six months. My nails are down to a quick and my cuticles looked like a raccoon has eaten them. The fingernail that I crushed in the car door fell off but that is no surprise since it was totally black. It is grown about half way. My doctor increased my dosage of protonix to control the nasty acid reflux. United Health Care "PRO'S" had requested my doc to have me only take one pill a day instead of two last year. Well, that did not work! My doctor also prescribed me some Ambien to help me go to sleep when I need it. She said it was better for me to take the Ambien rather than the Xanax. I had no idea that Ambien would be better for you rather than Xanax. One learns new things all the time.

We are optimistic that the last two rounds of chemo will work and put Joe in a longer period of time of complete remission with of course, God's help. We need lots of His help along with giving us the strength and tenacity to fight on.

Before we land in Houston, we are taking a detour to Florida for six highly anticipated days with our family at Cape San Blas on the beach. To be with each other over Easter is truly a blessing from God since we had it as a goal. It was so iffy that we could achieve that goal. It seems like forever since I have seen both my sons and my two granddaughters, Samantha and Emily. Keith is flying in from Memphis with his girlfriend, Jennifer Lindsey. I will take lots of photos and post them when I can.

Happy Easter! Happy Passover! Happy Springtime! God is with you and your loved ones! Pray for a cure of all cancers. Lately I have had too many friends across the globe and at home, fighting cancer who mean so much to me. I know that everyone knows someone who has cancer or survived cancer or who loss their battle with it. I pray for peace and good health with plenty of love and hope for all.

Thank you for reading my blog. I had no idea how much it meant to me until I started to do it.


Wednesday, April 13, 2011


Last night, Tuesday 4/12, as Joe and I watched the Braves game on TV, I could not but notice that his face was beet red like the worse sunburn you can imagine. He did not have a fever but was having the sweats all day long along with being so very tired. From Joe's extensive medical history, I knew that his hematocrit (HCT) had to be very, very high. It is exactly what Joe experienced when he had Polycythemia Vera (PV) where he would need to have regular phlebotomies for having too much blood. Phlebotomies are where the hematologist takes blood out and takes about 30 minutes much faster than getting blood. If you remember reading last week, his Winship at Emory clerk had messed up his appointment day to the day we were flying to Houston thus he did not get it done. At that time his hematocrit was 51, high but not real excessive. There was no time to get a phleb at MDACC since it was a day filled of scheduled tests and doctor appointments.

The appointment time for the blood test to see where Joe's blood levels was at 7:30 AM so we got up at an early 6AM. I got 5 hours sleep but Joe got a decent night's sleep. His face was still beet red but no fever and his blood pressure and heat beat was normal, Unfortunately Joe lost weight again, he was 165.1 with his shoes on so more milk shakes and ice cream for Mr. Joe. Joe was called back for the blood test in a timely manner. Unfortunately, this is not normal at Winship at Emory. I was getting antsy waiting for Joe to be called into the Infusion Ward but the appointment time for that was 8:30 AM and he was called at 8:37 which is darn good for them. He was assigned the last seat in Row B where there are 8 hospital chairs where no one else was yet assigned but by the time we left, every chair was full. Joe got a blanket and made himself comfortable so he could fall asleep. I started to bug the nurses' station for a copy of his blood test so I could make my 9:05 appointment with my orthopedic sports medicine doctor, Dr. Mason. Eunice, Joe's assigned nurse,verbally told me his HCT was an astonishing 58.2. I wanted to see it in writing and within a few minutes later, I had it. Wow, it was true and it had Joe's name on the top. No wonder, his face was so red. It explained the tiredness and the sweats on and off all day long. I stated to Eunice that it appeared to me that Joe would probably need another phleb on Friday and Monday to get the HCT down to a safe level. The concern with a high HCT is clotting and strokes which of course is life threatening. I left Winship and drove 10 minutes over to the Emory Clinic Orthopedic and Spine Center located in Executive Park, Remarkably I arrived on time. My nurse walked me through the maze of offices and gave me my stylish cover. When she came back in the room, she had the monstrous large needle in her hand. I teasingly told her that she should not have let me see it since I could freak out but I did not. The sonogram machine was already in the room so Dr. Mason could get the cortisone shot right into the shoulder joint. The only thing they give you is some cold spray to supposedly help with the pain which by the way tastes awful since some got into my mouth. You can keep the jokes away my friends and family! LOL. I did OKAY though I did slightly jerked a few times but Mason said I did good. I figure with what Joe has to go through, I could handle it for 10 minutes or so. I squeezed my eyes shut and gritted my teeth as it went in. Mason did a good job. He gave me a prescription for some meds as well as Physical Therapy which I will do while I am in Houston. Heck if Houston TIRR Medical Center is good enough for Representative Gabby then it is good enough for me. It is located directly behind MDACC - very convenient, huh?

I was headed back to Joe by 9:50 AM. I called him and he stated that the phleb was done and they were giving him an IV of saline which is a good idea to do since one can get faint after blood is removed which happened to Joe only one time over a 12 year period. Drinking lots of liquids , such as water or Gatorade,beforehand is a key to prevent dizziness or fainting, While I was getting my shoulder tended to, Joe told me that Physician Assistant, the lovely Jessica Neely, came to see him prior to the phleb. Joe said that I should have seen the expression on her face when she saw how red he was. She asked him why he was so red and Joe told her it was because he had too much blood. As as I driving back to Joe, she came back down to see Joe after the phleb and spoke to me about maybe Monday or Tuesday would be best for Joe's next phleb but she would consult Dr. Winton about it since I stated I thought it should be Friday and Monday. Jessica thought that might be too soon. I was back with Joe at 10:10 AM as he was getting his IV of Saline. His face was already 50% less red. He stated he already felt much better that he had more energy already. Jessica came back while we were waiting and stated that Dr Winton said that Joe should come back in on Friday and Monday for a blood test and a scheduled phleb. Well, how about that! Winton tried to get down to see Joe but he was called into a meeting and that he would stop by and see Joe on Friday once they page him. Winton told Jessica that when the HCT is high like Joe's that one doe snot have to wait to have another phleb. We walked out of Winship at Emory at 11:20. Joe says that he was starving, Yeah! His appetite was BACKKKKKKK! I could tell he felt better since his posture was more up and he walked more firmly and quicker. His optimism was also back. Praise the Lord. We had lunch at Steak'N'Steak at the corner of LaVista and North Druid Hills where we beat the lunch crowd. Joe ate his entire lunch after I edged him on to eat the last 5 fries on his plate since he was ever so close to finishing it all. Good job, Mr. Joe!

As we drove up Musket hill to our home that we could not help notice that the tree and huge stump was still in the front yard. The tree man failed to show up again. Joe hopped in his shiny red Ford F150 pick up to talk to the tree company that was doing tree work for someone on Gunstock. They told Joe that they would be finished in 30 minutes and would come by our home to take a look at what we needed and give us a price. Sure enough, they were at our home in 30 minutes and offered us a price of only $$200 compared to $600 that our normal tree guy was quoting us. I admit that I was my skeptical self and questioned Joe's wisdom of hiring a person off the street to do the work. The crew chief was a muscular tattooed woman with 4 Latinos. She sensed my concern and promised that she would not mess up our yard or plants. I went into the house and decided that I could not bear to watch since that would add more stress that I did not need. The tree and huge stump is gone. I lost one dried out hydrangea that has not flowered since I transplanted it two years ago. I was NOT happy to see that my new nicely grass yard that I worked so hard on growing was pulled up for about 10 feet. I grumbled loudly to Joe. He promised to reseed those areas as well as where the DeKalb County Water department fixed the water main to our home several days ago, They did see it some but I am not sure it was enough to satisfy me. Joe stated that since we saved $400 that I could buy some new hydrangeas and the pink dogwood tree that I always wanted. We went shopping for the pink dogwood at Pikes, Home Depot's two locations nearby and Lowe's. I called another Pikes Nursery over on Toco Hills who stated that he had five pick dogwoods priced at $125 but were 6 ft tall and wrapped in burlap. Great! But thrifty me decided to hit Home Depot and Lowe's on Hwy 78 had about 8 pink dogwoods from 3 ft tall to 5 feet tall for only $25. I actually picked the smaller one since I liked how the branches were growing on it plus it looked healthier and the pink flowers looked perfect. I also purchased some panting soil for trees and bushes. Joe stayed in the truck as I ran into each place since I try not to wear him out. He knows that I am focused fast shopper so he does not ever mind waiting for me. Good guy!

When we got home, Joe worked in the yard blowing our long driveway and walkways as well as our deck, He was definitely feeling better and he did not even take a nap today. Hey, a little blood letting worked its magic. He looked even better as the day progressed and ate about 90% of his dinner at Applebee's. I did serve him two scoops of Strawberry Ice Cream as he watched the Braves lose to the Fish (Marlins). When he came into the house, I went outside to plant the dogwood where the 100 foot hardwood used to be. I dug a two foot hole, mixed the soil mix with the moist Georgia Red Clay, refilled the hole, made a moat around the perimeter to hold water. I need to get some mulch tomorrow to help keep the ground from drying out. I was a dirty gal when I finished doing the task. I came into the house and went right into the Laundry room to strip down to my birthday suit and put the muddy clothes into the wash. I headed upstairs to take a hot shower that felt heavenly and I smelled and looked a heck of a bunch better. Once I got back downstairs Joe was hungry and ready to go to dinner at Applebee's on Hwy 78 since we could watch the Braves game as we ate. I had one of their Weight Watcher's 550 calorie meal of Teriyaki Shrimp Pasta which was quite tasty so I will have that again as well as highly recommending it. I had read in the paper that for the last two months that the biggest selling meals have been Applebee's 550 Weight Watcher's meals. They are pretty darn good. Joe had the Asagio Peppercorn Steak and enjoyed it very much.

Joe headed to bed at 11:30 PM and announced to me that he had no sweats all day long! He was sure happy about that. The Phleb will do that to someone who has Polycythemia Vera.

I spoke to my friend, Nancy Smith who is Ray Buff's very close friend tonight. She told me that the surgeon worked on Buff for 11 hours very carefully removed veins and an aorta from the pancreas tumor.His spleen was also removed. The doc told the family that he believes he got all of the tumor. He will be in Intensive Care for 2 days then in a regular room for 8 days if all goes well. Please continue to pray for my long time friend, Ray Buff, his good friend and his family.

Tomorrow I have my "Welcome to Medicare Physical" with my wonderful caring internist, Dr. Shabah Shah at Emory Clinic across the street from the CDC. I can't imagine it being very thorough but Medicare encourages it so I will get it done.

I am tired so good night my blog followers who I treasured. You sure all know how to boost my spirit and keep me motivated at continuing the blog.

May the peace of the Lord be with you, your family, our country and physicians!


Tuesday, April 12, 2011

4/12/11 Roller Coaster Going Down the Tracks

The Roller Coaster ride called Mantle Cell Lymphoma along with Myelofibrosis changed directions this morning by going down a big hill. If one does not have a mental illness before they get cancer, they sure will when experiencing all the ups and downs of fighting cancer. It wears both the patient and caregiver out. Trying to be positive takes great effort for the caregiver so your loved one does not seep into the dark side of depression.

For some reason last night I was a ball of nerves and stressed out way more than normal. I do the deep breathing my MPD support pal, Zhen, suggests. I did not try to fight it so as Joe went to bed. I stayed up until I calmed down. I find going to bed stressed and not able to sleep makes the stress even worse. So, I read, watch TV, play solitaire but I do nothing to add more stress such as doing taxes or straightening out health insurance issues. It is weird that I have no issue working on Joe's health insurance issues but when I get my own, I get anxiety. On January 1 of this year, I had to join Medicare which I did parts A and B. I kept my health insurance retirement coverage from HSBC. Medicare does a good job handling the claims but the United Health Care PPO makes it more difficult than it needs to be. I appreciate the Medicare website where I can print up the Explanation of Benefits. I also am able to print up United Health Care denials of every single one of them stating that I have some other health insurance coverage other then Medicare. Where the hell did they get that idea is really strange to me? I have had United Health Care (UHC) for 20 years or more with HSBC. I printed everything up today and matched it all to try to figure out where the bottleneck is. Tomorrow I will call UHC. Ugh! I HATE having to deal with that and it does stress me OUT! I wish I had an advocate for me like I am for Joe. I am sure God thinks I can handle it and handle it, I will. Now, Bonnie, Zhen says take some deep breaths.

Now the roller coaster down slope! I received an e-mail from Dr. Romaguera, Joe's Lymphoma expert at MDACC. He had reviewed the CAT scans of the groin lymph nodes and this is what he said.

"Compared with December, retroperitoneal nodes shrunk from 1.12 X .84 to .49 X .52.

I would recommend trying to get cycles 7 and 8."

Retroperitoneal lymph nodes are lymph nodes located in the retroperitoneum. The retroperitoneum is an area at the back of the abdomen behind the intestines. If anyone knows the normal size of retrperitoneal lymph nodes are, please let me know. From Dr Romaguera's measurements, it seems that they must be pretty small to begin with.

So, it means that Joe and I are headed back to Houston for another extended stay for 6-8 weeks. Joe will be re-admitted into M D Anderson Cancer Center on 4/27 for Part A of the HyerCVAD-R for six days then have two weeks off before entering back into the hospital for Part B which is the hardest one on Joe. We trust Dr. Romaguera's judgment. If he believes Joe needs more chemo, then he needs it. Dr Romaguera's goal is to save Joe's life and extend it as much as possible. He says Joe did extremely well with the chemo compared to most people including much younger ones.

Tomorrow morning Joe has a 7:30 AM appointment at Winship at Emory for a CBC test. If Joe's hematocrit is over 48, he will get a phlebotomy which is taking blood out of his body. I am sure that he needs to have one since Joe's face is so red. I remember that sign when Joe was tackling with Polycythemia Vera (PV) for 12 years. Joe has been very tired for about 5 days so I hope that getting the phleb will enhance his energy level. I also have some concern about Joe's appetite which I have been watching carefully. It has been a bit better the last two days but I got plenty of Ice Cream and Fortified Ensure to make a calorie laden milk shake to get good nutrition in his skinny body.

I also got another call from Joe's local dermatologist who did a biopsy last week on a growth on his neck. It is squamous cell cancer so we will go back to see him next Tuesday to cut it out and stitch it up. Dr Braza froze some of the pre-cancerous spots on his face last week. Joe has had issues with basal and squamous cell cancers on his face for many years so this is not a new issue.

I have my appointment with the orthopedic doctor with give that shot into the shoulder joint along with future Physical Therapy. The problem for me is that we are heading back to Texas so I suppose I will start the PT in Houston, somehow and sometime which causes me some additional stress issues since I can seem to follow through on treatment with physical therapy. The shot helped reduce the pain by 60% and gave me more arm movement the last time they did it at the end of January.

Today I had my visit with my periodontist, Dr. Gary Greenwald, in Norcross. I had missed several follow up appointments so it was catch up time which I was dreading. I HATE going to the dentist. I hate getting my teeth and gums picked at but I do it since I have to. He had the dental hygienist put some antibiotics to both upper sides of my rear teeth to assist me with the habitual periodontal disease since he is now aware that I can not keep up with the follow up appointments because of Joe's cancer fight. Dr Greenwald is also Joe's periodontist and he is aware that Joe can not have periodontal work while his immune system is compromised.

Joe is suffering from a bit of melancholy (blues). When he gets that tired feeling, he gets down. He would never use the word "depressed." I try to keep him focus on our Easter 5 days mini-vacation to Cape San Blas with our two sons and two beloved granddaughters next week. We are both looking forward to being with our kids that is out little "oasis" of fun and love.

The Evans' Roller Coaster keeps trucking along on its tracks. I hope the next roller coaster ride is a little kids one since we need a respite that lasts longer.


Monday, April 11, 2011

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 6th 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.


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

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




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


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 6th 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.


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.



Thursday, April 7, 2011

4/5/11 Tuesday: Timber......Challenges Faced

It is hard to believe that 10 days has passed since I last updated the blog. The first week things were going very nicely which means there were no surprises or challenges. The weather in Atlanta was cold and gray for most of the first week. It meant we slept late, caught up on mail, enjoy watching our HD TV, watched the DVR programs I recorded, went to our church, enjoy our local restaurants, read my backlog of magazines, give Joe daily IVs of ERAXIS. Joe 's cough seemed to improve each day so perhaps the meds were working and being home was adding to the wellness regimen.

The first blood test on 3/31 we had at Winship at Emory showed that Joe's counts were improving. One shocker on the hematocrit count was that it was a high 51.2. It was at a level when Joe had Polycythemia Vera (PV) from 1997-2008 that he would need a plebebotomy. A plebebotomy (plebe) is the opposite of a blood transfusion. Blood is actually removed from the body and is normally done at a hematologist office. I scanned the blood test (CBC) and attached it to an e-mail to Dr. Romaguera (R) who responded very quickly. He had already discussed the findings with Dr. Vertosovek (V) who is the expert in Myeloprolifative Neoplasms (MPN which used to be called MPD). He told Dr R that Joe should have a plebebotomy. Dr R was also concerned that Joe's White Blood Counts (WBC) and Neutrophils were low and he instructed me to give Joe only one shot of Neupogin since Joe's history of its use cause his counts to recover very quickly. Joe should have have another CBC before the end of the week as well as a plebe.

I contacted Jessica Neely, the Physician's Assistant (PA), at Winship at Emory who instructed DyAnne, the scheduler, to set the appointment for a new CBC and Plebe at the Transfusion Department on the Plaza level. DyAnne sent me an email stating all she get was an appointment for Tuesday 7:30 AM, April 5th, which is the day we were to fly to Houston for Joe's followup appointments at MD Anderson Cancer Center (MDACC). I questioned her via e-mail and she said there was nothing available for 4/1 or 4/4.

The evening of Monday, April 4th, there was a violent weather front coming towards us. To the west of us there were reports of many trees down, high winds, tennis ball sized hail and tornadoes, as well as heavy rain. At about 11:45 PM the winds soared with violent intensity with leaves, limbs flying sideways. Trees were bending like it was a hurricane. The lightning lit up the skies as thunder roared. Max was trembling and would not leave my side. It was impossible for me to sleep so I watched the storm. Joe slept soundly through nature's commotion. At about 12:15 AM the power went off. I lit some candles and found one operational flashlight. When I looked at the front storm door, I saw lots of down limbs. One of the 100 feet tall hardwood trees near the road looked like it was leaning but I thought that it was my imagination. I went to bed at 1:30 AM (Tuesday 4/5) and could not sleep. I finally fell asleep at 5AM but we had to wake up at 6AM to get to Winship at Emory. I could hardly wake up. It was still dark when I went outside to see what damage there was from the night before. It was so very cold. Our tree had fallen across Musket Court with the road being impassable. Our neighbor, Greg Bennett, came over and said that we would work on it once daylight came. There was no possible way that Joe would be able to help but I could. He told me not to worry and that all would work out. I went back into the house and told Joe what had happened and that we were stuck at home. Greg knocked on our door with a flashlight and a thermos of hot coffee. Greg had a generator that gave his home electricity. We are going to have to buy us one. What a Godsend! I walked down the street to see if there were other trees down but it was too dark to see anything There was enough daylight at about 7AM and we both went outside to access the situation. Joe had already called Colin at Southeast Tree Service. Colin stated that he had to work on one of his customers where a tree crashed onto their roof then he would come over to our home. Charlie Lester, our neighbor across the street, showed all of us standing in the street that a neighbor's ivy laden tree had crashed into his roof and left a huge gash with many broken roof beams. Water had rushed in from the large hole and went through four levels of their home. What a disaster! Their tree service with 5 strong men had driven up the hill and could not get to their home. So the men cut our tree that was blocking the road until there was a path for one vehicle. What a blessing for us since we had to get to Emory to get Joe his plebe! Oh No! Our massive tree root that was completely out of the ground had broken our water main and meter. Water was gushing out of the ground. No wonder we had no water in the house. I called the DeKalb County Water Department and they stated that they would come out immediately. Since the Lester's tree service was there, Joe asked them if they would remove our tree after they finished with the Lesters' home and the owner said he would. Things were working out. We were on our way to Winship at Emory at 8:15 AM and got there at 8:30 AM for our 7:30AM appointment. We signed in and waited. At 8:45 AM the clerk called Joe up to the counter and told him that he missed his appointment for Monday, April 4th at 7:30 AM. What! That can't not be! DyAnne had e-mailed me the wrong date. Even after I questioned it, she insisted our appointment was for Tuesday, 4/5. The clerk said she would call the doctor's office upstairs to see if they could do another order and they would try to fit us in. I showed the clerk the trail of e-mails that DyAnne had sent me that our appointment was 4/5. I did not want them to think that we messed up. At 10AM I told Joe that maybe God was telling us that Joe should not be getting a plebe and that we should listen to Him. I told the clerk that we had to leave since we had a plane to catch. She told me the reason it was taking so long was because Joe's blood is taken through a PICC line and only certain people were authorized to do it that way. What the heck! Why couldn't they just draw the blood through the other arm and not through the PICC line. NUTS! INSANE! We left. I called Dr. Winton's office to report what had happened so it would not happen again. On the way home we stopped at McDonald's on North Decatur Road since Emory Village had no power. McDonalds had their own large generator so they were operational except for their cash registers. Smart management had a contingency plan and it was working. The cashiers did everything manually. Joe ate every bite of his pancake breakfast and I had a sausage biscuit. By the time we got home it was 11:30 AM. I packed up for our trip to Houston. I started picking up the limbs in the front yard until I could not bend down anymore. Joe had gone to Walmart and bought at least eight flashlights and a slew of batteries. He asked me to helped him to put them together but I had no energy left so he did it himself.

We left out home about 1:30 PM to drop Max off at the Silberman's home in the Henderson Mill area. Joe stayed in the truck while I took Max and his goodie bag to Lauren and Keith. Their two kids were at pre-school so I did not get to see them. Their golden retriever, Bailey, greeted me and with happy woof and his tail wagging a mile a minute. The Silberman's were so gracious to watch Max for us. Camp Woof was filled up because it was Spring break and we were in a spot. They had offered their help once before so I took them up on their offer. I knew the Silbermans from when I worked as a loan officer at Bank of America. They were real estate agents who used me for their needs and their customers. We worked terrifically together since we all truly cared about the customer and believed in superior service. If anyone needs a fabulous agent, you need not look any further than this couple. I personally guarantee your full satisfaction.

Joe drove to the airport with no issue with traffic at all. I had already printed our boarding passes the night before the power went out. Also, we had only one carry on bag and a iced medical bag with Joe's ERAXIS IV and all the paraphernalia that goes with it. Going through security was a breeze. I made security aware of the medical bag and they had no concerns with it at all. They did not even open it up. Wow! Our Air Tran flight was all the way on Concourse D which is really far away from the terminal. Thank goodness for the subway tram system. We were able to sit which was good for Joe. We were starving so we grab some Burger King on Concourse D which we were able to eat just before we boarded. The plane left 15 minutes late but that was no issue for us. We were actually grateful for it for us to catch our breath. The day was very windy from the front that passed through Atlanta. The plane was a bit bumpy for about 30 minutes then it smooth out. I relaxed and read USA Today and nodded asleep a few times. We arrived in Houston at 5:30 PM CST. The Super Shuttle efficiently took us to the Marriott Courtyard Medical Center with arriving there at 6:15. Our room was clean, large and nicely decorated. The bed looked heavenly inviting. The Courtyard had a shuttle to take people to the Medical Center, shopping and to restaurants. We chose to eat at Pappasito's Cantina. Even on a Tuesday night there was a wait of 15 minutes so we headed to the bar where I had a Sangria Rita and Joe a Sweet Iced Tea. We both enjoyed our dinners tremendously until we were stuffed to the gills. The Courtyard Shuttle picked us up and we were back in the hotel at 9:05PM. We watched and listened to the Braves Baseball game on my iPhone. What an amazing clear picture it has on that tiny display. I bought the year long app for $19.95 so we can always at least listen to our Bravos.

Joe was asleep by 10:30 AM. I checked and returned e-mails and watched a little TV. I was in bed at midnight. I tried to sleep but totally failed since I had a very miserable bout with acid reflux. I had no medicine for it and suffered with it for two hours. I got dressed and headed downstairs where there is a small store. Thankfully there was some Pepto Bismol tablets and some Zantac where I bought both of them and took them promptly when I got up to the room. I had to wait some more till they had some effect. Finally at 5AM, I fell asleep only to be awaken by Joe shaking me to wake up at 6AM. Oh my, I just could not wake up and he felt sorry for me and decided to let me sleep for another hour but alas, it was not to be. We got dressed and headed down to the lobby where there is also s small bistro where Joe munched on a blueberry muffin and I had a bagel with light cream cheese.

The Hotel Shuttle Bus picked us up at 7:10 AM and we were dropped off the front door of the main building of MD Anderson Cancer Center.

I will write a separate blog of the happenings of Wednesday, April 6 and today April 7. This one is long enough.