Wednesday, December 29, 2010


Monday started with labs at  8AM Winship at Emory. Joe's blood counts had plummeted from 12/23. Four days later his WBC went from 5.90 to .90 (normal is 4 to 11). His Red Blood Count went from 3.42 to 2.54 (normal is 4.5-6). His Hemoglobin went from 10.1 to 7.30 (normal is (14-18). Hematocrit went from 29.6 to  21.80 (normal is 40-54). Platelets dropped from 37 to 4 (normal is 140-440). There was no doubt that Joe needed a transfusion of red blood cells and platelets. Dr.Winton was on vacation so we met with RN Jessica Neely who is a pretty long darked hair lady with a reassuring smile and voice. She sent us down to the Infusion Clinic to get the transfusion which was about 1PM. It takes awhile to get the blood typing done and the blood to the clinic so  that is why the transfusion did not start till about 1PM. The transfusion RN started the platelet IV bag which was only one unit which concerned me since at MDA Joe had gotten six units for four days in one week after Part B of the HyperCVAD-R chemotherapy. Of course I spoke up and the nurse said that was Winship's protocol and that any more than one unit is wasted. I again spoke up and the Infusion RN got RN Neely on the phone to speak with me who stated the same thing but she agreed to get a post transfusion platelet count after receiving the red blood cells where the results showed that it went up to 14. It was still low. RN Nelly had scheduled Joe for a follow-up on Thursday. Again, I spoke up that Thursday is too long with the low platelet count and only one unit given along with Joe's history of low platelet counts after Part B chemo. Neely started that if Joe had bleeding that I should call her on Wednesday and she would order a platelet count and infusions if needed. I guess that is considered a compromise and I agreed to it.

The Lab and Infusion at Winship at Emory is handled differently. Change does create anxiety but one must adapt to change. The Lab and Infusion Department is located in the Plaza Level of Winship at Emory where the entrance to the building is on ground level of the parking lot. There is a long warm hallway that enters the small lobby and just before that is a nice garden to escape but of no use with the frigid weather. It will be so nice in the spring listening to the fountain and being among the spring blooms. As you come into the COURAGE level of the building (each level has a special name), to the left is the Bone Marrow Transplant/Hematology Department and to the right is the Lab and Infusion Department. At 8AM every chair and couch was taken with standing room only. I thought that this was nuts with all these people coming in at the same time. A true waste of time for the patients and put them in danger of catching a virus from other people. One goes to the counter to put your name and date of birth on a sheet of paper then you wait and wait until someone in the lab calls you to draw your blood out of your PICC line which takes a short time. After that one must wait and wait for the blood results so Winton's office can review them and that takes another hour to hour and half or more. You go back down to the Infusion Clinic and get a beeper to wait your turn where the beeper is only good in the Winship building. We had two hours till our "appointment" with Infusion so we went to the little Sandwich and Coffee area on floor two which is called Mocha Delites, a place Joe liked caused of the good coffee. I had a delicious hot chocolate. Around the corner of Mocha Delites is a patient refuge area where one can get free coffee and little snacks with very comfortable chairs. They had lots of literature on the various cancers where I grabbed a handful which were very informative and up to date. There were magazines, books, tapes and other delightful people to converse with along with some wonderful congenial volunteers. One patient was immensely enjoying his Kindle, a Christmas present with a neat cover with a light on it.The man showed me the bells and whistles and I was sold!. Joe told me to order one for my birthday and I did yesterday on line with It is Amazon's biggest seller ever.

The beeper finally went off at 1:10PM so off we walked down one flight of the steps marked as Courage to the Infusion Lab. Joe gets his weight, blood pressure and temperature read. Joe's blood pressure has been low like 104/56 or even lower. No one makes it a point of talking about. The Infusion Clinc has about 10 rows with four recliners in each side so that makes 80 stations where there were dozens of RN's working like crazy. There is no privacy like MDA where each patient has a private room and the caregiver had a chair that reclined. The chair for the caregiver at Winship is a basic straight back chair and  there is no way to be comfortable plus they keep it so cold in the clinic. I am going to have to remember to bring my electric throw blanket in the future since I hate being cold. UGH! We finished up the transfusions at 5:15 PM and had made arrangements for Keith to meet us at the Buckhead Diner. We ran into no traffic and got from Emory to the restaurant in 15 minutes. Unheard of, for sure! I enjoyed a glass of Pinot Grigio with Joe having a Coke along with the Blue Maytag Cheese Homemade Potato Chips which is sinfully amazing and addicting. It is worth going there to try these magical chips. Keith got there a little before six where the restaurant was now hopping with merriment and lots of  people. Dinner was enjoyed for the most part but the best of it was eating together after a long day at Winship at Emory.

We got home on Monday evening in plenty of time to see the darn Saints beat the Falcons. We were not surprise by it since there was just too much hype about the game. It was an exciting game and either team could have won it but what the heck, the Falcons have already made it to the playoffs.

Tuesday was a nice slow day where we did not do much except some minor things around the house like taking down Emily's Christmas tree, straightening up and some laundry. As we were watching TV, I was massaging Joe's legs which sends him into a zen zone every time. He had put on shorts earlier so I was able to see his legs which had a bunch of red blotches and bruises. I looked at his arms and he had a bunch of them there. The name of this condition is called petechiae which basically means that his capillaries are leaking which is common with very low platelets.  I was alarmed and sent a message to our mentor, Larry Lewis, in Virginia. As usual he was very helpful and filled me with information. I took photos of Joe's limbs and sent them to Larry and my retired  RN friend, Janet Rubin, who lives in California. I had gotten enough information to listen to my gut and decided that we were heading to Winship at Emory in the morning. I knew that rhere was no way that Joe would go to the hospital last night. I was grateful for the support that we received.

Max, our retriever, alerted me early this morning that he had to go out and luckily it was just before 8AM. I decided to e-mail Dr.Winton's RN Neely the photos of Joe's limbs. I also called Winton's office and had to leave a message and added to the message that RN Neely look at the limb photos that I had e-mailed. At 9:30 AM Joe and I were both up for the day so instead of waiting for the return call, we decided to head over to Winship. We stopped at Panera Bread first which is basically across the street from Winship for a light breakfast. Sure enough about 10:10 AM Neely called me back and that yes, indeed, Joe needed platelets and probably red blood cells. She said Winton was back from his awesome vacation to the Galapagos Islands and he was considering Joe having a CBC everyday. Amen! A doctor who had the same frame of mind as I had. I told her we were at Panera and she advised us to go right to the labs since they were expecting us. She instructed me that once Joe was in the chair in the Infusion Clinic to have the Infusion nurses page her. Winton and she would come down to see us. There is a bunch of waiting for the blood results and typing as usual. I suppose it was about Noon when Joe sat in the recliner. We waiting for about 30 minutes more and RN Neely showed up without us paging her then Dr. Winton followed shortly afterwards with the CBC results to go over. Joe platelets dropped from Monday to today to 6 from the post-platelet draw on Monday of 14 which means a danger of bleeding anywhere in and outside of his body. His White Blood Count was almost to zero at .6 which means he could catch an infection easily. His hemoglobin was now a low 7.7 meaning he needed red blood cells. His hematocrit was 22.7. The low hematocrit would cause of lack of energy. Winton did discuss about the one unit of platelets versus the six units at MDA and was willing to call MDA to determine why the difference, He stated it could the platelets at Winton were more compact then MDA. It is possible that Joe will need a better blood match than what is being given to him. He stated rhere were other ways to get the platelets count up. Thankfully he told us that Joe's clotting ability was good since that was tested which gave me some peace of mind. We agreed to an every other day CBC until Joe is out of danger so we will be back early Friday morning. Hopefully the blood will be in better shape then so we can drive down to Jacksonville to see our Granddaughters, Samantha and Emily, since we missed having Christmas with them. We would come back after watching the Falcons beat up on the lowly Panthers on Sunday afternoon.

The transfusions went smoothly as usual. Before they start, they give Joe some benedryl and tylenol which puts him into a relaxed state and falls asleep. I worked on the excel spreadsheet. I created it when Joe got diagnosed with Mantle Cell Lymphoma . It has been and continues to be invaluable. I pulled it up for Dr Winton where he could see the trend. Joe is at the low ebb between chemotherapies and that he should start to recover by Friday. I think so too. We left the clinic about 5PM so it was another long day but it did create a peace of mind for me at least. Winton told Joe to stop his bungie jumping, jumping out of airplanes, playing football and soccer to stop the issue of leaking capillaries. I like Dr. Winton.

On our way home we stopped at Melton's on North Decatur Road to have an early dinner. We both had cheeseburgers that were cooked medium well. We prefer medium rare but with Joe's compromised health state, we decided to leave it the way they served it. We stopped by Walmart in Stone Mountain on the way home to pick up some more Orange Juice since Joe drinks a half gallon every day and some more of his beloved Fig Newtons. I needed some makeup and some haircare. We were back in our warm cozy home by 7PM and we are almost ready to call it a day. Tonight Joe changed a light bulb and scratched his knuckle which made a stream of blood. Nurse Bonnie got out the stuff to take care of it and again had to change the bandage. It looks like the bleeding finally stopped after an hour or so. Joe now had the realization of the danger of getting even a small cut. He is now enjoying a piece of his sister Donna's cheesecake that she made for Joe at Christmas. He is loving it.

It is a day of rest for Thursday. Hopefully we can call VIZIO and find out why the sound on the new TV is not balanced. It goes loud and soft all time in the middle of a program and the commercials are blasting us out of the living room. I tried everything the manual stated. We had enough excitement for at least a few days.

Thank you for your continued prayers and kind thoughts. I love reading the comments on this blog since it keeps me writing it. It is a great means of letting out stress, keeping people informed, a log of what happened.

Good night, dear people!

Sunday, December 26, 2010

Christmas Dreams 12/26/10

Yep, I have not posted for over a week. It was a combination of too busy, too tired as well as the stupid arm. Let me how much I can remember.

On Monday 12/20 Joe was released from Emory University Hospital at 6PM. It took all day to get the blood results and two units of  red blood as well as the doctor's OK to be released. Upon the release we got 13 prescriptions filled in the pharmacy. The discharge orders had Joe not coming back for a blood test till after Christmas on 12/27 which I felt was dangerously long. Joe's had to have transfusions of platelets and red blood several times after each week of chemo in Houston. Joe called (yes, he did!) called Dr. Winford's office and got the nurse who came to us while we waited for the drug orders to be filled. After we discussed the history of Joe's needing transfusions she agreed to give him an appointment for early Thursday morning in the Infusion Department on the first floor of the Winship Cancer Institute which is located next to the Emory Clinics. She also directed Joe to take the Neupogin shots every other day since he had an historical trend of his white blood cells increasing rapidly. It sounded like a good plan to me so we agreed with it.

On our way home Joe wanted to eat dinner at our locally owned Mexican restaurant in Tucker called Sangrias where everyone knows our name and treats us special. We both had the Pollo Rancheros  which is white meat chicken with ranchero sauce covered with melted cheese with refried black beans and Mexican Rice. It goes together so well.

Joe was so happy to walk back into our home where he had two weeks at home over the Christmas and New Year's holidays which was both part of our Christmas prayers and dream. He loved his new HD large screen TV for the living room where he prefers to watch his shows. Donna, Rick and Jessie came to our home the previous weekend and put the TV stand and TV together for us. What a wonderful gift they gave Joe by doing that for him since he would not have the energy to accomplish such a task. Joe particularly enjoyed sleeping in our comfortable pillow top king size bed where it was quiet, dark and warm. Max slept at the bottom of the bed at our feet for a few hours. Simple pleasures have become so wonderful.

Tuesday was Bonnie's day and I had no idea that I would enjoy it as much as I did. I started early by going to see my internist, Dr. Shah, at Emory Clinic on Clifton Road. She has been my internist for the last three years and I really like her. She seems to take a real personal interest in her patients and remembers things about you that other doctors would never even think of remembering. My blood results from the previous week was excellent much to my surprise with my cholesterol at 175, glucose at 85 and great levels of good and bad cholesterol. She did review my MRI that I had before we left for Houston. She said there were several issues that were causing my right arm pain from my shoulder to my finger tips The C6 and C7 discs were bulging with compressions of the discs together along with degenerative disc disease. Oh the wonderful physical issues of getting older are playing havoc on my stamina, flexibility and pain levels. I mentioned to her that I had an appointment to see Dr. Garcia at the Emory Orthopedic and Spine Center on January 3. Dr. Shah stated that several of her patients used him and were very satisfied. I did nor like the first doctor I saw there, Dr. Levy, who was a cold fish and had no warmth in him at all,

After that appointment I headed to lunch then to my hair appointment at Hair Clips with Ina whom I have been going to for about fifteen to twenty years. I had my hair colored, foiled,and re-styled and left as a new woman. Joe liked my hair and the style since it was a little bit different. He noticed my hair which is saying a bunch.

Early Thursday morning we headed to the Winship Cancer Institute at Emory for his blood test to see if Joe needed transfusions. Waiting for the results is almost like waiting for your college tests results where you are nervous but very anxious to see the results. There were not many people in the waiting area so it appear that we would not be waiting long. They called Joe back and I did not go since at MDACC they would take his blood then we would wait in the waiting room area till the results came back. Well, after thirty minutes, I realized that it was different here. So I gathered up all our stuff and went into the Infusion area and started walking around looking for Joe to no avail. I asked one of the nurses where could I find my husband and she directed me to another nurse to then directed me to the other side of the clinic where they did the chemos and transfusions in a ward like area with maybe five transfusion recliners on one wall and five across the other wall with no privacy at all like they had at MDACC

On Friday I went back to Ina, my hairdresser, and told her my hair need more highlights. Without hesitation she redid the foiling and my hair is perfect. I love it! My oldest son arrived from Memphis like a tornado with broadcasting his Tea Party views before I could even hug him and say hello but that is Keith. He can drive me insane at times but he lets off this steam at me with all that is wrong with government and religion. I stated all the good things which makes it quite confrontational. He had his mortgage refinance closing at our home on our kitchen table where the title company came to him. The lady was here for about an hour and a half.  After all of that we went to the 7PM Christmas Eve service at Eastminster Presbyterian which was so pretty with it ending with singing Silent Night amongst all the lighted candles by the congregation and guests. It was our first visit to our church since we got back in Atlanta and it was a wonderful feeling being home. After the service, Pastor Caleb  grabbed us to say how happy he was to see Joe in the pews. He said he could see Joe from the pulpit with his bald head and mask to guard against germs. He was a sight for sore eyes, Caleb stated. Since there are three services at our church on Christmas Eve, we did not get to see all the wonderful people who supported us with their prayers during our Mantle Cell Lymphoma journey. The few that saw us were full of hugs and smiles with joy for us that we were home for Christmas. Joe would state with a smile that he was still among the living. He would tell them he felt fine but does not have the energy that he used to have. Well guess what, me neither!

After church service Joe, Keith and I headed to Prime at Lenox Mall for a wonderful Christmas Eve dinner. Prime has been one of Joe's and mine consistent favorite restaurants. We were delighted to be able to share a fabulous dinner with our son.

Christmas Day was wonderful in that we were home and rested nearly all day except for brunch at IHOP on US78 in Lilburn. The same pretty Arab lady waited on us as she did in previous times. We left our home in Stone Mountain about 5:15 PM to drive to Dawsonville. It was snowing and it was sticking to the grass and tree tops. Heading up 400 North to Dawsonville the snow was falling thicker with bigger soft light flakes. What a beautiful sight to see the limbs of the barren trees covered with snow that produced living sculptures along the highway. It has become a magical Christmas evening with white icing decorating the earth. As we turned off 400 into Dawson Forrest Road next to the North Georgia Premium Outlets the road was covered in snow where you could barely see the tire tracks of previous passing vehicles. There was a car in front of me going so very slows as the snow came down even thicker than before. It was hard to see where the edges of the road were on this dark snowy road. The car in front of me turned thus there was no one for me to follow. What a difference that made in how I drove which was slowly since I could hardly see in front of me with the snow falling so hard. Putting on my bright lights made it worse but we finally made it to Joe's sister's home. My youngest son, Michael, had arrived there five minutes before us after making the long drive from Jacksonville to be with the family for Christmas dinner. Joe's brother, Drew and his wife Josephine from Columbia, SC were there as well as Joe's two wonderful nieces, Jessie and Jennifer along with Jessie's two young daughters, Christine and Sydney. Everyone was so happy to see Joe and each other. Donna made a wonderful meal that everyone devoured  with Honey-Baked Ham, Sweet Potatoes, Mac n Cheese, Green Beans, Bonnie's Gelatin Srawberry Delight and rolls. For dessert, Donna made two of Joe's most favorite desserts from recipes that I had from my Mom and a friend. It was cheesecake and tiramasu. Yummy Stuff! Joe was so pleased that he took some home and has been nibbling on those delights. When we left Donna's home, the roads had cleared up and it has stopped snowing leaving behind more of nature's artistic elements along the highway. Perfect evening with people we love and who love us.

When we got home, we opened our gifts to each other but each of us already had received out gifts of love and family. Off we went and snuggled back into our beds for a long winter's sleep.

This morning the boys woke up late which was fine with Joe and me since we remember how we loved the holidays for rest and rejuvenating our weary bodies. Since Mike was heading back home, we had lunch at the Golden Buddha. Mike loves that place since he can not get Mongolian Chicken in Jacksonville nor Hot and Sour Soup,. Keith can not get Sizzling Rice Soup in Memphis so we ordered that for him and me. I was somewhat disappointed since the service and food was not up to the high standards from our past experiences. I hope that is was a fluke and I told the manager why it was lacking. We kissed and hugged Mike good-bye and thanked him for trekking here to share Christmas with us. Joe and I hope to make it to Jacksonville New Year's weekend to have our Christmas with our granddaughters. It will depend on Joe's blood tests and how he feels. If the girls have a cold, we would have to postpone it till they were well. Joe wants to see them as much as I do.

The only incidents Joe had since the chemo was a bloody nose at Prime on Christmas Eve. Luckily it stopped right away but it did startled Keith who spotted it first. I explained that it occurred from Joe's low platelet counts and that Joe had to be very careful when he blows his nose.  Joe's cough has lessened thanks to the cough medicine with codeine in it which has been a blessing. It has enabled him to get a good night's sleep.

Early Monday morning we head to Winship for Joe's blood tests at 8AM to see where he is at right now. At 9AM we see Dr.Winton to review the results and his comments on how the chemo went. It would be more of a surprise if Joe did NOT need platelets or red blood cells. It will be like waiting again for a college exam results.

Dreams of being home for Christmas came true then on top of it all, we had a White Christmas. It sounds like a movie script. I like the ending but we are looking for new beginnings and adventures in 2011.


Merry Christmas to All with Love and Affection,

Tuesday, December 21, 2010

REALLY HOME!!!!12/20/10 and 12/21/10

Joe is really at home now after finally being discharged from Emory University Hospital on Monday at 4PM after receiving 2 units of red blood since his hemoglobin and hematocrit were on the low side. I am happy they gave him the transfusion yesterday instead of waiting till they dropped precariously low. We had to stop at the hospital pharmacy and get 13 prescriptions filled on top of the normal ones Joe takes. The weekly pill box is jammed up to the top.

Emory University Hospital for cancer patients is no where near the caliber of MDACC in Houston. They have a long way to go to get to that level, It does concern me but Joe insists on being home. I lean more on the best of care but we are scheduled to fly out to Houston for two nights on 2/1/10 since I insist on Dr. Romaguera being heavily involved with Joe's care. It is worth the expense since it will give me peace of mind, There were many times that speaking up saved a bunch of issues such as what were Joe's reactions at MDACC from the chemo and the number of transfusions. The excel spreadsheets tracking the the blood and electrolyte counts were invaluable. I had to mention several times that they needed to include the magnesium and phosphate levels.  The dairy of the blog was also valuable since I could pin point exactly Joe's reactions to the chemo and after the chemo. I highly recommend that if you get a serious disease is to create spreadsheets to track your counts and create a blog to create a log of events.

Joe did very good on Part B of the HyperCVAD-R. He had no adverse reactions though his cough and sinus infection did get worse but he was exactly in the right place to have them taken care of. He is very tired but that is expected for the next week. We will visit Winship Cancer Institute on Thursday to get lab work done on Joe since we need to watch for a dramatic increase in his white blood count which has happened after the other chemos and taking neupogin. At discharge they were not going to have blood work done till 12/27 until we alerted Romaguera's RN and we explained why. She agreed with us and added Thursday's lab work. One must take charge of your care or a loved one's care. I can not stress that enough. You WILL either save their life or prevent undue suffering.

Today was Bonnie's day of TLC. I surprised myself on how upbeat I was about it. I started with a follow up exam with my Emory Clinic internist, Dr. Shah, whom I love. She is so thorough and has such empathy. She had my lab work from last week and I am in better shape though fatter that I was six months ago. My total Cholesterol was 175, HDL 56 and LDL 101 and my electrolytes in the normal range. I must admit that I was surprise after all that good eating in Houston and 6 months ago I weighed less and was exercising four days a week. I told Dr Shah that I had an appointment on 1/3 to see Dr. Garcia at the Emory Orthopedic and Spine Center. She said that several of her patients used him and were very happy with the end result. She did look at my MRI of my neck and said there were several issues there that needed tending to. I knew that since my right arm had been getting steadily hurting worse and less ability to move it.

This afternoon I got the works done on my hair finally. It involved coloring it, foiling and a new hairstyle. Joe likes it and it is nice for a change but we will have to see if I can do my hair the way it needs to be done. I got home about 5PM and Joe had taken a solid nap, unpacked his suitcase, threw out the trash, did a load of laundry. We headed to Enzo's Pizza Place in Tucker where it was jammed up with young families so it was loud and kids running around. It bothered Joe so we did not stay long. Ate and ran.

To toot my horn a little bit on what I accomplished the last few days:
I fixed the stopped up toilet.
I fixed my notepad.
I worked on getting the mothball smells out of the house.
I got Joe to be more involved with his medical care.
I was able to do some last minute on line shopping for Christmas.
I got Joe's new TV working with hooking it up the HD Cable Box.
I got my car keys and notepad back from Biloxi (FEDEX charged $56, WOW!)

I got Joe safe at home for Christmas (my huge Christmas wish).
I got some time to myself today.
I did not have to be admitted to the mental ward.

Thank you, Lord, since I could have not done these things without you. You led the way.

Peace be with everyone. May Love be felt everyday in your lives.


Sunday, December 19, 2010


Thank you for those of you wrote comments on my blog which really helps my sanity. I read all of them and digest what you say since so many times they are so helpful.

After I signed off several nights ago when I was venting to the ninth degree, I went potty in my downstairs bathroom. When I flushed, it overflowed onto the rug and soaked it. We had a plunger but for the life of me I could not find it anywhere. I think that we must have loaned it to someone. I just put the cover onto the toilet so I would not use it till I got a plunger the next day. I think I finally hit the sack at 2AM when I felt somewhat calm where I felt I could sleep. I did.

I headed  to Home Depot and bought two heavy duty plungers, one for upstairs and one for downstairs. I stopped at Publix and picked up Joe his Raspberry Lemonade with an additional stop at CVS to get him some chapstick, antiseptic liquid, ear thermometer, a new weekly pill box. At Publix I also had them make some of their delicious heroes which Joe and I love.

I got back to the hospital about 1:30PM since I was not in any rush to get there because of what happened the day before. Joe had called me on my cell and home phone. I did not answer either one on purpose to make me feel I had some control over my life besides taking care of him. Joe was happy to see me and asked me how I was feeling and I told him "Better." He made no mention of the previous days outburst and appeared to ignore it. BUT, he did make a positive change. He spoke up to the nurses. Asked what medications (pills) they were giving to him and why. He would remind them about what he needed. Tremendous progress was advanced by Joe. I just kept quiet. He even asked me if I had anything to add to the nurse and doctor. Thank you, Lord. I suppose that is better than an apology and I will take it.

Dr. Heffner is very pleased with Joe's chemotherapy results and was surprise how well he responded with no ill side effects. He even stated that he was pretty sure that they could get Joe's Mantle Cell Lymphoma into remission which was music to both our ears. Heffner ordered two units of packed red blood to boost up his hemoglobin which got down to 7. His hematocrit got really low to about 20 and there was concern that he was bleeding someone but he was not. Joe is tough! I left early that night at about 7:30PM to head home.

Once I got home, I tried to get on my notepad but the touch pad was not working. Being so tired, I decided to wait till the next day to call support where I was on the phone for 10 hours! Yes, 10 hours and it still was not resolved. In fact, it caused other issues.I tried to download the Touchpad drvier from the ASUS website but after trying five DVD's, I gave up.  I even ran out of the house at 10:30PM to Walmart to get a flash driver to load the touchpad driver from Joe's computer so I could load it on mine. Without having a touch pad or a mouse, it was about impossible to move around the screen to get it to do what they wanted me to do. They told me to buy a mouse and back up my files that I did not want to lose, and send the notepad back to them and they would get it back to where it was when I first got the notepad. UGH! I just gave up for now till my brain recovers from all the bottlenecks. I was successful in getting the toilet unstopped. YEAH, Bonnie, Miss Plunger of the year!

Today is Sunday and my goal was to get the Comcast HD Digital Box working with Joe's new TV. His sister, brother in law and niece had taken it out of the huge box and assembled it as well as the TV stand for it to be attached to when we were in Houston but could not get the TV to work since we needed a digital HD cable box. I had ordered it last week from Comcast so it would be at home when we got back from Atlanta. It was a bit challenging but after two hours and one hot shower during the download time, it was working. The picture is amazing. Joe is going to love it.

On the way to the hospital I stopped at Jason's to get a sandwich to take out for myself that I could eat at the hospital which worked out great. When I arrived to Joe's room about 1:45PM, he was starting to eat lunch so we were able to eat together. All day long we watched football games along as reading the Sunday paper. We watched our second favorite team, Jacksonville Jaguars, get beat by Payton Manning. The next game was the Falcons playing Seattle at 4PM. The Falcons killed them. Matt Ryan was in a special zone all day long. The Falcons are in the playoffs no matter what happens the next two weeks. The Falcons are 12-2 and it is the best team they have ever had. I looked at buying some Falcon/Saints tickets for MNF but the cheapest was $189 a seat. Forget about it!

Joe should be getting discharged from Emory University Hospital tomorrow if all continues to go well. It will depend on his blood counts in the morning.

Joe's sister, Donna, visited him today for two hours and he enjoyed it so very much. His brother, Drew, from Columbia, South Carolina called later and they had a nice chat. Linda Redman gave me a call from our church and that she had flowers for us but flowers are not permitted in the chemo rooms of patients so I told her to leave them at the front door tomorrow. I love colorful flowers and enjoy looking at them.

Good night. Thank you for your prayers. I will be going home shortly since I am getting sleepy and I need to get to the hospital early to meet with the doctor and discharge nurse.


Saturday, December 18, 2010


Please be aware that this blog today will be filled with me blowing off some steam since I have no other venue in which to let it hang all out. There were great and wonderful things that happened also. Stress and anxiety builds up until it becomes impossible to control since one can not longer think clearly. So, let me get one with it. It is not my intent to gain sympathy or attention. I just got to release it off my chest.

Leaving Biloxi for the last leg home was a bit hectic since I had all the responsibility to get everything organized and together. Joe took Max outside to relieve himself. I had every arm filled with stuff to bring out to the car and  I also had to check out of the hotel. As I got to the car, it was obvious that I needed help so why do I have to ask for it all the time. DUH! On top of that, Joe did not have Max on his leash and he is handing it to me to attach the leash to Max. Hello! Plus Joe just threw stuff into the car without any regard to whether it was secured so it would not fall on Max. Joe is not helpless, not in pain and not worn out. With nearly everything on my shoulders, I had to rearrange the back seat so Max would have room to lay down, Joe gave him NO ROOM. DUH! Without realizing it, I had put my car keys on top of the car as I completed the task.

Joe decided to drive first so he used his set of keys. About an hour on the road, La Quinta called me to advise me that I had left my laptop in the room. They advised me to find a FEDEX store, prepay, set up an air bill and set up a pick up. Let me tell you first hand that there is NOTHING between Biloxi and Montgomery, Alabama. I spent the entire time on my iPhone trying to locate a FEDEX outlet to no avail. On FACEBOOK I sent out an appeal for help and two people responded where the closest store was in Montgomery. During all of this, Joe had one thing on his mind, LUNCH, while I was stressing out about finding a FEDEX store. He wanted me to find a Steak N Shake on my iPhone. Like, I wasn't already doing something. Every time I would try to enter info on the FEDEX website someone would call me and I would lose all the info I inputted. FRUSTRATION! One phone call was from my son griping about the delay of a Subordination Agreement from Bank of America so he could finish his refinance. He was venting by screaming at me. Like I needed that! It never occurred that I had my own heavy duty issues. I had to end the call abruptly since I had to solve the FEDEX issue. 

My friend Beth had given me a FEDEX location in Montgomery and I got directions off the iPhone. I had the address but none of the many retail places on the busy road had no street numbers on their buildings thus making it impossible to find the place. When I called the FEDEX location, the stupid recording stuff, push 1, push 2,  hit #. The directions the recording on the phone only gave the address. I call back and held on the line until I got a person on the phone and kept them on the phone till we got in front of the store. Joe drops me off at the front door. I wait on line since there are several people in front of me. Finally I told the person of my dilemma and she states that they do not do that here but yet she had FEDEX on her shirt. Good Grief! Some tears of frustration came before the manager came and got the 800# on the line to speak to me. Why didn't the 800# do all of this while I set up an FEDEX account as we were driving on I65! Got it set up and I called La Quinta to tell them the order number and that FEDEX would give them a box and I requested they make sure the laptop was secured before giving it to FEDEX. I got back to the car and Joe has no idea what went on. I told him that nothing was as simple as it should be.He asked for no details.

Biloxi. I called the front desk at La Quinta and requested them to go to the first lane of the parking lot to see if they could find my LEXUS keys. Not there, they said. SO I chalked it up for a lost. I got Max some water for his bowl on the way out. GEEZ! Is anyone else thinking? 

It was my turn to drive and about an hour later as we were on the road again, La Quinta called me back stating that they found my keys on the other side of the parking lot. They must have flown off the top off my car. Fedex had already picked up my laptop so I told them to mail my keys via regular mail. All Joe would say was that I was lucky. Some consoling and real empathy there!

About an hour and half of driving, I could not stay awake so I asked Joe to take over driving which he did.  On on the Stone Mountain Freeway, I saw the huge Christmas Tree on top of Stone Mountain. We were home and the tears flowed. We got home about 6:30PM just as the drizzling rain was starting to freeze up on the roads. Joe said that he would empty the car if I would put the stuff away. As I walked into the house, I could smell food cooking. On the counter there was a huge basket of fresh fruit, all kinds of bread, a crock pot of Beef Burgundy. Oh MY! There was a Christmas Tree so lit up on our den. There were notes from the Bennetts, our neighbors, about the food and tree. Top Quality, my maid service, had freshened up my home and left massive amounts of food in our refrigerator. I was so touched that tears flowed down my eyes. Thank you. Thank you. Thank you.

When I looked in the living room, Joe was laying on the floor which scared the hell out of me. When I asked him what was wrong, he stated that he is  OK. He was exhausted from getting the stuff out of the car. Why in the world can't he tell me what is really happening to him? This is becoming a huge issue. He holds stuff back which is dangerous.

We were both exhausted and we had to be at Winship Cancer Institute at 8AM. I think we finally hit our bed at 1AM and had to get up at 6:30PM which came way too fast. Joe had his blood drawn and we waited for the 9AM appointment with Dr. Winton. We saw several people before we ever saw Winton at 11:30. The medical personnel would ask Joe questions about his current medical history and Joe was answering them wrong. I interrupted him to give the correct information. The staff could not understand when Joe would say NO to a question and when I clarified it, they stated that was important information for them. Joe told me to be quiet and made some snide remarks about my pushiness in correcting him. I tried my best to stay quiet but Joe kept giving them wrong information. The heck with it, I gave them the full facts. This happened with three of the medical staff. I was exasperated. Joe did this with Winton also. In the meantime the nurse asked me where MDACC faxed Romaguera's instructions from Monday. I got on the phone but there was no connection back in the medical offices so I had to go out to the waiting area. It was crazy going back and forth and FINALLY the nurse tells me they found the fax AFTER I was making phone calls to get it resolved. I was also worried about what Joe was saying to the medical staff when I was not there. Joe would tell them he felt great and that he had no issues with the chemo at MDACC. All inaccurate but I did not become aware of this until Joe had already been admitted, Joe failed to tell him the extent of the sinus infection and nasty cough. He failed to tell them about the tumor lysis and the kidney issues. UNREAL! I can not tell you the anxiety and stress level of his actions were causing me. I told Joe that he needed to tell them everything. Joe has this strange notion that they are professionals and they should figure out everything on their own. You do not tell someone you are fine when you are not. They are going to take you at face value that you are OK.

Joe got to his Emory hospital room E617 at 1PM. The rooms are older at Emory and not as well equipped as MDACC. I was starting to get nervous whether Joe would get good care here by the way the ward  and room was set up. Slowly things began to move about 6PM when they started the fluids and premedication. He would start with Rituzan, the monoclonal antibody which started after I had gone hone at 8:30 since I had no more left in me. The repetition of Joe's medical history and the constant correction on what Joe stated, with Joe telling me to hush up, stating I was always interrupting, making me the bad guy. Of course the main doctor had came when I went to the car to get Joe's belongings which I knew would be an issue since Joe was still not stating the actual facts. He was feeling great and he had no issues with the chemo. Oh my, this is NUTS!

When I got home, all I did was sit for two hours and did nothing. I was trying to chill out from the stress of the day. I prayed that all would go well with the Rituxan that night and left it in God's hands. I crashing in bed at 10:30 PM and I did not wake up till 8:45AM. I started to get the things that Joe would need at the hospital. I used one of my luggage carry ons to put stuff in it so it was on rollers to make it easier to get everything back up to the hospital room. I took Max out for a walk and it was a beautiful brisk cool morning where I was able to see how well the new lawn that we had planted before we left home had done. Our neighbors had the lawn mowed and the massive leaves  removed. Bless them.

My first stop was at Emory Clinic Lab to get my blood drawn so it will be ready for my internist's appointment on Tuesday which went fast and easy in only 20 minutes so I got no charge for parking. YEAH! Next stop was CVS to get Joe some Robitussin DM and some Curell, Fig Newtons and newspapers. Onto Publix I went to get a Hero for lunch, chips, Raspberry Lemonade, peanuts, bugles, and diet cokes. I was able to get this all into the carry on bag except for the coke which I left in the care. I finally made it to Joe's room about 1PM. Unpacked all the goodies he loves and we had our little picnic on the hospital table. He was was getting a unit of red blood cells since his hemoglobin dropped to 7 and he also had a huge drop in his hematocrit which concern them greatly since they were worried about bleeding. Joe was also getting the next chemo of the Methotrexate which goes for 24 hours. Joe's platelets had also dropped to 95. Another unit of blood was later given that afternoon after an X-Ray to make sure his lungs were clear.

Dr Heffner came in while I was in the room this time. Thank you Lord since I relayed the correct information about what happened on Part B chemo at MDACC which Joe did not mentioned to him I also discussed with the PA previously that day, the pharmacist about the sinus infection and horrible cough. I also was able to use my blog exactly when the tumor lysis happened and about the Red Blood Counts dropping, the white cell huge drop as well as the numerous transfusions of platelets and red blood cells Joe had had at MDACC which was valuable information they stated again. All of which Joe did not tell them the day before. I was getting tired of this and again Joe making me out to be too overbearing. I was now stressing out that we should have let Joe have all his treatment in Houston at MDACC which was so much better organized and was less repetition of the same stuff over and over again. About 6PM Joe's cough was really acting up and we called the nurses' station to request the "pearl" pill that the pharmacist stated that Joe could ask for at any time. There was a shift at 7PM. We waited and we called again. The alarms kept going off on the pumps. We called on it, again, and again. No one comes. I go to the nurses station about the alarms and where the heck is the pill. I has not seen any personnel come in the room for hours. At 9PM I had it. They find the nurse and she claims she had seen Joe ???? and that Joe told her that he was fine and made no mention of the cough pill or that we had called twice and I had gone up to the nurses station. I never saw the 2nd shift nor was her name and phone number on the board. Joe did NOT speak up. Joe said he had seen her once but he did not mention anything to her. I lost it. I am tired of Joe telling people inaccurate information or speaking up when he needs something. I was upset with no one coming to the room with the meds or for anything for hours. I was not even sure if Joe really saw the 3nd shift nurse come into the room.  I really had regrets leaving MDACC with the best of care. I am sure that nurse thought I was having a nervous breakdown with the river of tears. After she left,  I told Joe that he is going to have to take more responsibility for his care and to tell people the truth. They can not read his mind nor can I. I told him that I had it with him telling everyone or inferring that I was over protective, over bearing or what. I came home.

Please people, call Joe as he is going through all this stuff. It helps him to talk to others besides me. He can talk about anything, You can talk about anything. You can reach him on his cell phone at 404.213.6222 or his direct hospital room phone at 404.712,3618.

I pray that Joe communicates better to the medical staff. I pray that the medical staff gives him better service. I pray to lean on God to carry me through this journey.


Tuesday, December 14, 2010

On the Road Again!

Somehow we got all our stuff jammed into our car for the trip back to Atlanta.  I gave the hotel maid the food we had left over, cleaning stuff, paper goods, bottled water, candles, extra scissors, the bright orange towels. She was very appreciative and I hugged her good-bye.

We had to stop by MDACC at 10AM to put up the CD's and reports of the X-Rays, PET and CT Scans since July 2010. Joe dropped me off at the front door so I could run up to the 3rd floor and pick them up as he drove around the block waiting for me to show back up front. I picked up the brown envelop, got a USA Today and Diet Coke and headed out to the pick up area just as Joe was driving back up. We were on the road to home at 11AM!

Joe drove the first 2 hours till we stopped for a gourmet lunch at La Wendy's somewhere in Louisiana off of Interstate 10. I took over the next two hours of driving with only one unexpected stop when Max was whining and barking in the back seat. I pulled off an exit to nowhere and looked for whatever he needed. In one of the bags he could see his toy rubber chicken's head and he wanted Charlie, the chicken. I also gave Max some ice cubes in case it was because he was thirsty. It solved the issue 100%, It was the first time ever that Max made a son in the car so I knew to handle it right away.

Back onto Interstate 10 I drove. It is so flat. One very interesting experience was between Lafayette and Baton Rouge driving over the Bayou. The bridge over it was an amazing 18 miles long with lots of big birds, water, swamps. One could see the mud on bridge pilings and see how high the water can get. It is mind boggling to imagine the area covered with miles and miles of high water. I could imagine the alligators and bugs down there. Fishing must be incredible I would think. God forbid if one would crash their car and go over the concrete railings into the bayou. In the beginning of the bayou I loved looking out into the swamps and see the trunks of the Cypress trees jutting out of the water with green grasslands which reminded me a bit of Africa.

My two hours were over and my gauge on the car said I had 20 miles left of gas in the car. We still had 94 miles to get to our hotel off of  Interstate 10 in Biloxi. Joe filled the car with gas as I ran to the restroom and took Max for a short walk. Joe also used the restroom but it took him longer since he had to wait till two truckers finished their showers. Oh my! I found that funny.

Joe drove the rest of the way to our Biloxi destination which is halfway home! How wonderful to be able to write that. We got to the La Quinta Inn at 5:45PM thus we made great time on the road from Houston to Biloxi.  A special note to my sister, Dolores! No, I was not driving like Mario Andretti! I did not once go over 80 miles an hour. It did help that there were lots of Highway State Patrol in Louisiana looking to a victim. They found plenty.

Check in went fine but the first door magnetic keys did not work. I am sure nearly everyone has experienced that. I went back down to the lobby on the first floor and the clerk redid the keys. Presto, they worked! Max was happy and I gave him a big bowl of water before Joe and I headed across the parking lot to Applebees. The service and food was good. It was good to get back to our room at 7PM where all we had to do was relax and watch TV. The only good show on TC tonight is "The Good Wife." I even got Joe to watch it and he enjoyed it. The acting and plot lines are great.

Now Max is laying next to me in Joe's spot on the comfortable bed and Joe is curled up in a chair with a blanket looking at ease, He still has that nasty cough but I believe the cough sounds a bit less congested today. He says he feels OK and enjoyed the drive with no bad weather the entire way.

Oh, as Joe drove his second leg into Mississippi, I read him the reports on the X-Rays and CT Scans. It was good news with a significant shrinkage of the lymphoma tumors from 2.7 centimeters down to  9mm which was the largest one. The spleen decreased in size significantly. The chemo is working. It was good reading the reports and understanding all the medical lingo. We were both happy and that we pray it continues so Joe will have more days on this earth.

How cool it will be tomorrow that when we get back in the car, we know that at the end of the day's journey, we will be home.


Monday, December 13, 2010


YES! Dr. Romaguera gave us an okay to head eastward and be home for Christmas. The Doc started to talk to us about being readmitted to MDACC for the next round of treatment and we reminded him that Joe was scheduled for part B chemo at Emory Winship Cancer Institute under Dr. Elliott Winton. I tried my best to be all ears to everything Romaguera had to say but it can be overwhelming. It was. Joe was very quiet on our drive over to MDACC and I had asked him what was wrong and if he was OK. Joe kept saying he was "fine" which really meant to me that he was not but he wasn't talking. The Fast Tracking Blood draw was at 7:45 AM with the visit with Romaguera at 9:00AM which is not normally on time since there is always a wait for the blood results. His wonderful nurse, Goley Richardson, asked all the medical questions including what happened Friday night. Before she left the room I gave her a thank you card and a gift certificate since we valued her care and expertise so much over the last two trying months. Goley could sense we were antsy since we were anxious to get Romaguera's blessing to go home to Atlanta for Christmas. I could sense that Romaguera was not totally sold on us going back to Atlanta which is purely my instinct. He told us that Joe should continue to take the antibiotics for his sinus infection for the full ten days and that he should not start the next round of part B chemo until he was 90% better since part B is rough but he knew that Joe did great on it. Romaguera stated that Joe did much better than he ever expected which pleased him. We looked at the brain CT scans carefully together. We did both see the meningioma benign small brain tumor on the outside covering of the brain which Joe has had for twenty years. It comes and goes but the rest of the CT brain scan was good. We then looked at the body CT scan where Romaguera pointed out that the lymphoma growths had shrunk but they were not big to begin with. All of the blood results were not in yet but the doc said the counts were stable on the red cells. Joe's platelets were 144 which is still in the normal range. Joe's spleen was measured at 17.5 cm which was way down from 30 cm when it all started. Romaguera felt that the spleen was still enlarged but he believed it was from Joe's other incurable disease, myelofibrosis (MF). We had been praying that the chemo would have made a difference on the MF but we will not truly know until the bone marrow biopsies are read by pathology which will not be completed until next Monday. Dr R stated that Joe needed to be careful about a spleen rupture since that would be life threatening. With the MF scarring the bone marrow, the marrow is not producing the white blood cells as it should so the spleen is doing the work of the marrow thus making it large. He stated that the spleen could go up and down in size during the treatment since the white blood cells will go up and down in numbers.  He also stated that a person could live without a spleen but how would that effect Joe since the spleen is doing the work of the bone marrow. If that were to happen, we will cross that bridge at that time. Romaguera told us that if he saw anything out of whack on any of the tests that he would call us this afternoon. He recommended that we go down to the Film Library and order a CD of his scans to take to Dr. Winton on our appointment on Thursday. Dr. Romaguera said he was going to write a letter and fax it to Dr. Winton about holding off the chemo on Thursday until Joe is 90% over the sinusitis. It gives us piece of mind that both of the doctors has an open line of communication. Romaguera wants us to come back to MDA for the same round of tests after every two rounds of chemo which is fine with us. Joe and I were very quiet as we left his office getting our mind and spirits in gear.

We stopped at the Film Library and put our name on the list for the CD to be done. Joe stated he had to go to the restroom and threw the box of Kleenex and calendar at me. I gave a "I do not believe it look" when another lady in the waiting room started to laugh since she saw it all happen. It was a bit strange. While Joe was gone, they called our name and I completed the request. We will pick the CD at 10AM on our way out of Houston on Tuesday.

When I got back to the hotel, I started to do the laundry to get ready to pack for our trip back to Atlanta. Joe walked back in at Noon as if nothing had happened. He asked me what he could do. I told him that he could apologize but only if it was sincere. He still hasn't. Yes, my feelings are still hurt. I will get over it eventually.

For the next two hours we gathered everything together and packed as well as organizing everything. Yesterday someone had sideswiped my car on the driver's side so Joe went out there to see if he could wax it out. He came back about 15 minutes ago stating that he was able to get rid of most of it where it was no longer noticeable. Joe is great about that kind of stuff.

Oh, I wanted to tell you about our experience at Joel Osteen's Lakewood Church. We got there at about 10:30 AM to get a decent parking spot in the mammoth parking garage and followed the crowd as to where to go. The building is huge. As we entered the building atrium, joyful upbeat happy Christmas Carols were loudly playing making it a grand welcoming entrance. It was like arriving to Phillips Arena with so many entrance doors and levels. We went up the escalator to the second level which was just above the floor. The stage was huge with a "V" like display with the 100 member chorus on both sides of the V. In the middle of the bottom back of the V was a powerful gifted 9 member band. There were 9 featured singers on the main stage who sang upbeat rocking Christian music where the words where shown on the various huge screens around the stadium. Lights, color and felt like we were at a "happening" concert. People were swaying and clapping with the music as they stood. It was a massive stadium with four levels. It was not 100% filled. I am betting there was seating for 10 to 15 thousand people. The people on stage and singing all had bright happy smiles and into their zones. After about 20 minutes of music and singing, Joel welcomed the people with much thanks to those who were visiting for the first time. I would say that 30% of the crowd was first time visitors. Osteen stated that after a person came three times that they considered you as a member. He was very personable and gave positive energy with emphasis on the goodness and greatness of God and Jesus. His wife, Victoria, also spoke and was very pretty and dressed to the nines. Joel did  not give his sermon until about an hour after it all started. His sermon was meaningful to me with him telling about the oyster and a grain of sand. The sand is an irritation to the oyster who keeps trying to expel it. As it does this, a layer upon layer falls upon the grain of sand. Life is full of all kinds of irritations such as a bad marriage, unruly children, difficult bosses and colleagues, illness, family disputes and bad habits. God keeps putting these irritations in our way for us to change into a better human being instead of us trying to change the other person. He will keep putting these challenges in our way until we change and we will eventually turn into a beautiful pearl like the grain of sand in the oyster. Some people never will change cause they fight changing. God has given us the tools in which to grow into better humans and Christians. A wonderful timely message was given to all. Joel quoted the scripture many times all in relation to change. The service lasted from 11AM and we left at 12:45PM. It did  not feel that long.

Well, we are going out to dinner at Houston's to celebrate our release to go home for Christmas. Max knows something is up and has been prancing around with his head up high and his tail wagging. Max loves to travel.

My grain of sand is irritating right now so I am going to work on it and see what I can change of myself.

Peace and Love be with you all.


Sunday, December 12, 2010


Friday ended up being a whole bit exciting that I would have dreamed. Here is where prayers from Joe's Army held me up to the day's challenges and protected Joe.

Friday was busy with tests at MDACC so that Dr. Romaguera can determine where Joe's disease is now and whether Joe can be released on Monday out of his direct care at MDACC. The first visit  today was on the 10th floor for the Bone Marrow Aspiration and Biopsy without sedation. I do not know how Joe can stand getting this done without being sedated. The techs do give Joe a shot of Novocaine but imagine something like a wine opener going through the bone of your hip to get a sample of the bone marrow. Joe says it is more pressure than hurting but I say Joe is one mighty brave man. I am a chicken and I admit it. Period. Exclamation mark! Joe's appointment was at 11:30 AM and the waiting area was jammed packed with patients. By 12:30 PM he was called back where they took a sample out of each side of his hip. Good Grief. Joe walked out smiling. God bless his heart!

Next stop was for X-Rays at 1:20 PM where he was called exactly on time. My word! Who would have ever thought that! Not me, for sure! In the meantime, Dr. Winton's assistant called from Emory stating that MDACC was not going to release his bone marrow biopsy slides from pathology without Joe's written consent. Jeez, I thought I had done that last week at the Medical Record Release Department when Joe was an inpatient. I found out that the Pathology Release form must also be signed and it is located in a totally different area on the ground floor at MDACC. Joe had to be at the Mays Clinic at 2:20pm to get the prep for the CT scan scheduled at 4:20. I figured that he would get prep and we would head back over to MDACC to get the forms signed between appointments. The Mays Clinic is located across the street and down the block from the Main MDACC and is connected  by well-appreciated cross walk that go over two streets. The crossway connected MDACC, Faculty Center, Rotary House, Parking Garage and the Mays Clinic. It is a great convenience they designed since patients could avoid inclement weather and traffic. It also prevents traffic jams from people trying to cross the streets. The crossway is wide enough to have a bunch golf carts transporting people from one end to the other. Alas, we did not know that on our first walk from MDACC third floor over to the May's Clinic second floor. It is really long. I mean really, really long. Joe was finally called to get the prep to drink which amounted to about a half gallon of milky yucky stuff that they try to make taste decently. With Joe's prep drink we hopped onto one of the golf carts to take us back over to MDACC. With some assistance that were basically hints, we found the Pathology Record Department. The clerk who manned the area talked so softly that it was impossible for me to hear him even when I asked him to speak up. We got the forms. I completed them. Joe signed them and we gave them back to the soft spoken young man. Joe and I hopped back on the golf cart to get back over to the Mays Clinic to wait till he was called for the exam.

The Mays Clinic does not feel like a hospital or clinic at all with the carpet, marble, crome, artwork, and a huge atrium. There are several parks on top of roofs with lovely table, chairs, umbrellas and nice landscape design. It is new and wonderful. While we were waiting, I was able to do a little bit more Christmas shopping at the May's Clinic Gift Shop where they have some cool unique gifts type items. Joe was still waiting in the more comfortable waiting area for the CT exam. He was called back for the exam exactly at 4:20 PM which was the time for the appointment. The CT Clinic has an electronic board where one can see where in the process a patient is. I liked that. Joe told the prep got nastier in the back area where they give a Barium Enema. I will spare you the details and let you use your imagination. Joe finally walked carefully out of the CT area about 6:10PM. We were both grateful that the golf carts were still in operation although there was only one at that hour but that worked out fine. Joe stated that he needed to get to a men's room because of the effects of the enema.

Joe requested that I bring in dinner to the hotel since he needed to stay near the bathroom where he took a bunch of trips. He was tired from all the running around all day long so I drove over to Kenny & Ziggy's Deli around the block. I got us the chicken salad sandwich on rye that we love along with the best potato salad, fresh french fries (they had them after all) and a dessert for Joe which was monstrous. Joe was happy and grateful when I arrived back to the room and Max's nose was going wild from the fragrant smells of good food. Joe ate it with glee and ate about a quarter of the New York Cheesecake. As I was fiddling with my laptop having a email conversation with Larry Lewis, who also has Mantle Cell Lymphoma who lives in Virginia, Joe fell into a deep sleep sitting up then all hell broke loose at 8:50PM EST.

Joe had gone into a Grand Mal seizure which is quite violent and would scare the heck out of most people. This time it scare me big time since it was so unexpected with him taking Keppra for his night time seizure disorder. He had taken Dilantin for over 20 years to control his seizures and about twice a year he would have a break through seizure at night. The MDACC pharmacist called in a neurologist while Joe was in the hospital the second time for chemo.The pharmacist had a concern about the dilantin and the chemo interacting badly together. I had just canceled Joe's December appointment with the Emory neurologist for a second opinion 30 minutes before the neurologist showed up in Joe's hospital room since we would still be in Houston. It was decided to have Joe come off the Dilantin gradually then put him on Keppra at the same time. Joe had been totally off the Dilantin for over 10 days and just on Keppra to control his seizures.

At first I was in shock. At home I would have let Joe come out of the seizure on his own then give him four to five dilantin pills once he was somewhat coherent which would take about an hour to happen. I went around in circles for a few moments with my mind rushing like crazy. Do I let him come out of it on his own? Should I call the hospital? Who could I talk to? Should I call 911? I moved the coffee table away from him and he laid on his side totally out of it. As I dialed 911, Joe stopped breathing and turned a frightening color of blue. I thought that I had lost him. 911 stayed on the line and told him what to do and  I had already done what I knew to do or not do. 911 and I stopped our conversation and I called the front desk to make them aware that an ambulance would be coming so it would not take them by surprise. They arrived about 9:10PM and Joe's color was almost back but he was still unconscious. They took his vital signs. I gave them a briefing on Joe's status and a list of all his medications and that he needed to be taken to the MDA ER at the Main Building. They put an IV on him. He started to come to some senses where I could change his messed up shirt which they suggested. He was not able to communicate properly. When I asked him where he was, he was he was home. I asked him where was home. He stated "Everywhere." Joe has some sense of humor but unfortunately, he was serious. He started again not be to be to talk clearly so they took him out to the ambulance. I told them that I would meet them at MDA ER. I arrived 20 minutes before they did since they worked on Joe in the ambulance and get him securely fastened. By the time they wheeled Joe into the ER, he was his normal self and acting normally once again. He kept apologizing to me that he was sorry that it happened. Of course, it was not his fault and he appreciated me looking after him. I was relieved to have him tell him that I did the right thing. He arrived into the ER about 10:15 and the RN's started working on him right away. Since Joe had his brain scanned during the CT earlier that afternoon, they were able to get it reviewed by a neurologist right away. There was no growths or bleeding in the brain but from the CT scan, it was determined that he had sinusitis. I kept telling the staff about Joe's persistent cough and now we had another reason for it. It was also decided to raise his Keppra by 250mg and that he had been taking 1000 mg twice a day. We left the ER with a prescription for antibiotics and 250mg pills for added Keppra. When we arrived back in the hotel, and I looked at the Keppra and it turned out the pills were in 500mg form not the 1000mg that I thought he was taking thus he had been taking half of the dosage needed. I felt responsible for that but I am only human. Joe has so many pills that it looks like a handful of M&M's of all sizes. Joe was so glad to be back in our own space and that he had seen enough of MDACC for one day. I agreed.

I knew from experience that Joe would be resting most of the day today. When he has a seizure, he is so wiped out the next day that he sleeps most of the time. Today was no different. He stayed in bed till 3:30pm. He wanted to get out of the studio so we got his prescription filled at CVS and a gift from God, CVS was able to contact the Internist that I had seen locally a month ago and got the okay to refill the hydrocodeine for my arm pain. I take it only when it gets bad and I can not sleep. Thank you, God.

We went to the Edwards Cinema off of Katy Freeway to see "Burlesque." Joe hated it and said it was the worse acting that Cher ever has done. She was a bit plastic but Christina's singing and dancing was terrific and I loved the gaudy costumes. The actor who played the bartender and her roommate was a hunk so it was pleasant to watch him.

After the movie we were both hungry so we went to the Ninfa's on Post Oak Blvd near our hotel. What a surprise! It had a wonderful colorful new place with a Southwestern atmosphere with great service. The food was above my expectations. I had the tender moist perfectly cooked Pork Carnitas with fresh sliced riped tasty avocado, dash of sour cream, salsa, refried beans and Spanish rice. Joe had chili rellenos which he adored. Next door to the Ninfa's was the Dessert Gallery which we decided to get a cup of coffee and dessert. Joe had a slice of chocolate mousse cake and I had a slice of cheesecake topped with a layer of strawberry mousse. Yes, it was amazing and yes, we left half of each.

We are now back in the studio watching TV. Joe took a nap till Saturday Night Live came on as I typed the blog update. It has been hard to adjust to the TV times since prime time and everything is on an hour earlier here. I do not think that I could ever get adjusted to it. I changed Joe's dressing around his PICC line which is a detailed sterile procedure to prevent a dreaded infection.

So far so good, Joe is OK tonight. I pray that there are no other episodes.

Let me state this, that in the darkness of Friday night,  there were good. What a blessing it was that Joe had the seizure Friday night and not on the road back to Atlanta! What a blessing it was that we found out at the ER that Joe had sinusitis infection where they would give him antibiotics to treat it before it turned into something deadly! What a blessing to know that the amount of Keppra that he was taking was wrong to control his seizures. It was not because it was not working! Thank God that he gave me wisdom to call 911 and not panic! I am so very grateful. Here is another event where the prayers of Joe's Prayer Army have been listened by God Almighty. Thank you God for letting Joe still be here with us.

Tomorrow we will attend Lakewood Church at their 11AM service to hear Joel Osteen preach since we are curious to see him in action with his members. I will let you know what it was like tomorrow night in my blog.

Peace with all of you. My prayers to all those who are sick to be healed. My prayers to all those who are scared or lonely find help. My prayers to all those who are missing their loved ones. My prayers to our leaders and our military people. My prayers for Joe to get into complete remission and be safe of infections and all else. May those who are estranged from their loved ones find wholeness and forgiveness.


Friday, December 10, 2010

Improving Blood Counts and TESTS, TESTS, TESTS!

What a beautiful day it is here in Houston where the temperatures are suppose to reach into the 70's today! Walking outside and taking that first breathe of fresh air is wonderful. As much as we both love the Houston weather, we still are looking forward to be back in our home in front of a roaring fire in the fireplace while sitting next to each other appreciating what we have been given from God. He has given us the strength to endure the last two months with hope and faith.

Yesterday Joe had his regular Fast Track blood draw and we were both ecstatic to see that Joe's platelets soared to 151 which is in the normal range. What is wonderful about the platelets is that Joe's body produced those without any transfusions. It is a relief to see them in the normal range so we do not have to worry about serious bleeding from any small little thing like blowing his nose, coughing too hard, a small cut as well as big accidents that can happen. The other red blood counts continue to improve although they are not in the normal range but they are going in the right direction. We pray that the bad lymphocytes keep dying off till they are gone. The best we can hope for is a complete remission that would last 3-5 years. Eventually the lymphoma will come back and we will have to take additional therapy to contain it. The good news that with every passing day research is being done to add more years to one's life with lymphoma as well as a cure. A donation to the Leukemia and Lymphoma Society goes a long way. I have been impressed what this organization does to help patient and caregivers from an information point as well as emotional and financial support. The funds they raise goes into research also. I have heard first hand of people who are without health care because of job lost or disability get financial assistance. Joe and I are blessed that we do not need the financial assistance but the information, emotional, and research work has definitely helped us.

Starting at 11:30 AM today, Joe will first get a Bone Marrow Aspiration and Biopsy followed by X-Rays, CT prep, and then the CT at 4:30PM. I am sure that we will be at MDACC till early evening. We hope that the tests will show the positive results that we need.

Monday is the BIG day starting very early with a blood draw then our meeting with Dr. Romaguera to review the results. We will be on the edge of our seats listening to every word that the doctor says and pray that he okays Joe's transfer of care to Emory in Atlanta with Dr. Elliott Winton. If we get the release, we will then start to pack up what we have accumulated over the last two months and squeeze them into our car. If all goes well, we would start to drive back to Atlanta on Tuesday, 12/14 and drive half way stopping in Biloxi for the night. On Wednesday, 12/15, we drive the rest of the way home with butterflies in our tummies over excitement and should be home early evening. What a joy that will be for us!

The very next day, Thursday 12/16, Joe starts the day with Lab work at Emory followed by a visit with Dr. Winton. Joe will be admitted to Emory as an inpatient for a week of chemo. God willing he will be released on 12/23 just in time for Christmas. It will be God's gift to us and what a huge one that will be.

May your Christmas holiday be filled with love and good health along with thanking God for letting his Son come into our lives to save us in more ways than we could even imagine.


Tuesday, December 7, 2010


Today the sun shined brightly upon Joe and me, figuratively and accurately! Our first stop was the usual Panera Bread since we are creatures of habit at 7:15AM. Joe had Fast Track Lab appointment scheduled for 8AM and we got there at 7:55AM. Joe went right to the end of thechair  line for the blood draw that happened at  8:15AM. Next he went off to Vital Signs were OK although he lost 3 pounds thus he is down to 175 pounds. Joe is eating extremely well with dinner and desserts so I have no idea how he is losing weight. Perhaps it is from the shrinking spleen. Joe no longer looks 8 months pregnant but maybe 5.5 months.

Our next appointment to have the Fast Track review of his labs was not until 9:40AM so we had plenty of time to kill so Joe suggested we head to the second floor area called The Park where there is concession that sells his beloved Starbucks coffee. The chairs and area are much more comfortable which was very relaxing. Joe said that he felt terrific this morning as well as being very energetic. We felt hopeful that his blood counts would be decent just because of the way he felt. The Vital Signs Lymphoma department on the 6th floor gave Joe a beeper so when the labs were ready, we would be beeped. At 9:40AM with no beep on the beeper, Joe decided that we should head back up to the 6th floor just in case the beeper system had malfunction. The Lymphoma receptionist told Joe that the labs still were not ready that one must give the lab at least an hour and half to get it back to them.

Meanwhile, the Patient Advocate for MDACC called me from the message that I left on Monday morning about the Sunday's bottleneck on Joe's lab work with no one taking responsibility and that it appeared to me that there were multiple errors. The Advocate said it sounded like that to him and that he would get to the bottom of it and report back to me. I wish that I had said to him  while we were waiting in the Lymphoma clinic for today's blood count report. At 10:30 AM we finally saw a Physician's Assistant who apologized for the delay and that she had been calling the labs about where Joe's results were. She got the counts verbally and by the time she came to see us in the exam room, she had the printed lab work. She was smiling and said the counts were good based on the amount of chemo thus far and the time since the last chemo was completed. She expected that the red blood counts would improve some more by the next Fast Track on Thursday because of the way Joe's platelet counts went from 35 on Sunday to 90 today. It meant that his bone marrow was producing platelets and that comes first before the other red counts start coming up. She started once the platelet count hits 100 that they are convinced the chemo is working. His White Blood Count and Neutrophils were low but with the continuance of me giving Joe neuprogin shots each day that will improve also. She stated that Joe again did not need any blood transfusions which is also an excellent sign. Praise the Lord. It is the best news that we have had since we have been here on his Lymphoma. The PA also stated why Joe has the nagging cough which is caused by the nasal drip. She stated that it was common chemo patient issue which is caused by the chemo causing not only his head hair lost but also his nasal hair lost. It meant that the nasal drip had no hairs to attach to in the nostrils thus more coughing. She advised him to continue taking Robitusson DM since Romaguera frowns on Nyquil and other popular remedies. She reminded us that Romaguera is very conservative on what he allows his patients to do and use. We trust Romaguera so we will abide by his decisions. When the PA listened to Joe's heart, she stated he had a small murmur and asked if we knew he had one. We stated that was the first time we heard that he had one. She said it was not unusual to have a very mild murmur since his blood is thinner thus it rushes through his heart faster. On some of her other duties, she also does Bone Marrow Aspirations (Biopsies). We told her the Joe also has Myelofibrosis. It was interesting to hear her state that her experience with Myelofibrosis is that it is harder to get to their marrow since their bones seem harder.

We left MDACC at 11:10 AM and headed over to Best Buy to look at the Xbox 360 with Kinect but it is all sold out. I can not even find it at a reputable on line store. Any suggestions are appreciated from anyone how I can meet this Christmas wish. At Best Buy I needed to purchase a HDMI copper cable for the new TV that Joe will be using. Since I had $55.00 in Reward Zone coupons, the cable only cost me $4.95. What a deal!

It was now almost 11:30AM so I decided that we should go to lunch now instead of the grocery store so we could beat the crowd. Barry's Pizza was just down the road and Joe was pleased with the choice. We enjoyed a medium thin crust pizza with extra cheese, Italian sausage and mushrooms with Diet Cokes. Yep, we enjoyed it as usual even though we left one slice.

Publix's quality. Joe got another gallon of fresh Orange Juice, Fig Newtons and I picked up a magazine and a USA Today.

I was pretty sleepy since I have not been sleeping well because of the bum right arm so Joe told me to take a nap as he did some more detail work on the Lexus. Two hours later he finished and I already had been out of bed for an hour. We watched Oprah then went to dinner at Outbacks a few miles down the interstate loop. We both had the Grilled Chicken on the BarBee which is always tender and delicious. Joe loves their BBQ spicy sauce and asked for three helpings of it. I do not finish the one they gave me.

We were back in the hotel by 8PM so I could enjoy the Christmas Glee Episode which even Joe enjoyed. Now it is take it easy. I hope to get a good dent in my Christmas cards tonight.

Cheers to Joe's Prayer Army. Thank you to God for today's optimistic report. May it continue although we are realistic that there will be up and down days with this incurable disease. The Association of Hematologist (ASH) had their convention in Orlando the last few days so there will be plenty of news coming out and advances on all blood diseases. It was why there were no doctors on the floor since this is a very important conference for them to find out new techniques.

8 more days and we should be Home for Christmas. God willing.


Monday, December 6, 2010

Fab weekend and Bonnie ruffles some feather

Fabulous weekend of escape for Joe and me with my oldest son, Keith, flying from Memphis to Houston to be with us. It made the weekend go by fast which is a good thing since other patients state as the time gets closer to leaving MDACC, time starts to really drag. Keith gave us a special gift of time and we had some fun as well as some political discussions. He is absorbed in the Tea Party right now and wants to make a difference. The conversations get a bit interesting since we do not see the same way on certain things. I raised him to think for himself and make his own decisions on politics and indeed he has.

We picked up Keith right on time (9:10PM)  at Bush International Airport which is about a 30 minute drive from where we are staying. I did a Pasqual Perez circle around the entire perimeter of Houston. This place is HUGE! I love the city of Houston lights. We got over to the Galleria area about 9:45 PM and we ate at the "original" Papasito's Cantina. We all enjoyed our meals. Keith made a dinner out of two large appetizers and a Cadillac Margarita on the rocks. Joe had a combination dinner which he completed. I had a fabulous chicken flautas with yummy chunk tasty guacamole and sour cream and Spanish Rice. We got Keith a separate room at our hotel at a discount price so he would be comfortable.

On Saturday we met at 10AM in our room to head to Panera Bread for breakfast. The three of us put Max in the car and rode over to the Bark Dog Park. Keith was impressed with all the different dogs playing around and getting along so well. He saw a puppy that he wanted to get someday. It was a cutie with the softest red hair and sleek muscular body. Keith told us that his company is flying him from Memphis to Savannah for a face to face all day interview for a production manager type job. Joe and I pray that he gets it since that will mean he will be closer to us and Jacksonville where our younger son, Mike, and the grand kids are living.

We left the Dog Park and headed over to Edwards Cinema to see "The Next Three Days" with Russell Crowe after my youngest son told us how much he enjoyed it. Keith and Joe both move at the same pace - sloooooow. I like seeing the previews and I hate missing any part of a movie. They went to the concession stand which had a long line as I went into the theater to get a seat. There was hardly anyone there which is good for Joe since he is not suppose to be around crowds. I did not miss any part of the movie but the both of them missed about 2 minutes. The first half of the movie was slow building up the plot and suspense that Keith and I almost felt asleep. I can easily do that in a dark warm room with comfortable stadium chairs. The second half was fast pace and there was so issue in trying to stay awake. It was good. We came back and rested for a few hours before going out to dinner at La Vista Italian restaurant. The weather was still warm that one could eat outside but we chose to eat inside since there was less people and less noisy. We enjoyed our meals. Joe had the Lasagna which was a huge serving and he ate half of it. I had Eggplant Parmesan that was okay but I would not order it again. The tomato sauce was a bit runny and bland for my taste buds. Keith had Parmesan Encrusted Trout with was very good with a lots of taste. The trout tasted fresh and mild. After dinner we drove around a little bit to show Keith some places and some of the pretty Christmas lights. We got back at a decent time so Joe could rest some more and he went to bed early. I gave Keith my car keys so he could go out awhile which he did. He likes watching people so he enjoyed a little bit of freedom.

Joe and I had to get up very early on Sunday since we had to be at MDACC for lab tests at 7:45AM to determine if Joe needed a transfusion. One learns to develop patience in the Art of Waiting at MDACC. Joe's blood was finally drawn at 8:15AM so we headed up the 9th floor Sarcoma Department to wait for his appointment for 9:15AM with the nurse on duty. We waited and waited. Joe went to the restroom and I fell asleep in my chair with a blanket over me that one of the aides gave to make me comfortable. I had Joe go up to the receptionist at 10AM to find out what was taking so long. The nurse comes out and states she called us at 9:33 AM. There were only two couples in the waiting room so how the heck did that happen. The Sarcoma nurse stated that the labs were missing a few items on the lab report such as the all important platelet and hemoglobin count. I asked to see what was done so far and she did not have the written report with her. Hmmmmmm.... Finally about 10:45 AM she comes out to give us a copy of the report and states Joe did not need any red blood or platelet transfusions which was super terrific. She told us that the lab just did not complete all the lab work ordered the first time.

The chemo out patient was not scheduled till Noon so we drove back to the hotel to pick up Keith and the laptop and have lunch at Brown Bag Deli where Joe and I love their Rare Tender Roast Beef Sandwiches. Keith has now joined us in enjoying them. We got to the out patient chemo ward where we signed in at 12:05PM so we were on time. Joe went up one time to find out what was happening about 12:35PM. At 1pm the chemo nurse comes out and tells us that one of the blood counts was not completed, the Bilburin and that she had to order it since it was not ordered and sent Joe back down to the labs to get it done hoping that they still had the blood they took that morning. The blood was 4 hours and 1 minute old thus making it 1 minute pass the deadline to use that blood thus they has to draw blood again. We waited some more while watching the Jaguars game on the  laptop. I had enough waiting. I really did not want to raise heck. The clerk said the lab work was not in yet. I said that was not working as STAT. I did my Bonnie tornado walk to the Diagnostic Lab and asked the receptionist as I smiled and spoke softly that I wanted to speak to a supervisor. She stated there was no supervisor on duty. I came back and stated that there must be someone in "charge" and that I needed to speak with them immediately. She asked me what my needs were. I told her the story. She pulled up Joe's schedule and try to tell me that the work was never ordered. I had to convince her that he had two blood orders today and that surely she was not looking at it properly. I told her that someone is causing a bottleneck and I want to find out who is responsible so that it did not happen again. She tried again to tell me that the Chemo In Patient did not put in another order. I then requested her to get the Chemo In Patient on the phone and that they need to get it straighten out which she did. After about 7 minutes of the two of them on the phone, they stated the lab work was now in and that they would be called Joe in for his chemo now. I walked down to the Chemo In Patient and they called Joe back just as I walked back into the waiting room. A coincidence?  I doubt it. Someone needed to take responsibility and get it done. Joe got his premedication at 2:15PM which makes him drift away in LaLa Land. Keith and I headed over to Champps Sports Bar to watch the Falcons game. Joe was finished at 4:25 and he texted me to come get him. We got back to Champps as the second half was starting. It was a very intense exciting game where either one could be the winner. Thankfully the Falcons came up on top and remained in first place much to the dismay of the New Orleans Saints fan who sat in front of me who incited my exuberance. It was awesome. The three of us were cheering and doing the high five over the win. It turns out there was another couple from Suwanee, Georgia who happened to be in Houston for a company Christmas party. They came over to celebrate with us and it was hysterical. We all left at the same time. The three of us headed over for dinner at Pappa's Burgers where Joe and I had raved about the hamburgers and fries. This time we all ordered the burgers medium but they came out well done. I hate well done burgers. Keith and Joe did not mind but I sent mine back and got it the way I wanted which made me a happy diner. We got back to the hotel by 8PM and Keith looked totally wiped out so he said his good nights to us and good bye to Joe since I would be taking him to the airport at 4:30 AM and  let Joe sleep. I hardly slept at all since my right arm was hurting really bad all night long from the stupid bulging discs in my neck. It has been steadily getting worse and I have been holding on to get back to Atlanta. I did get to watch two of my favorite shows - Desperate Housewives and Brothers and Sisters on Sunday night.

Keith and I got off almost on time to get him to the airport since he wanted to get their early.He did not want to go through that body scanner but rather have the patdown.  I rather do the scanner. He hated that the TSA is making us ALL as if we were criminals thus we are losing our rights. He believes in profiling and I agree with that also since we know the type of person who wants to destroy us. I do not believe that they should examine every Moslem but they should be using common sense. We left the hotel at 4:33am and he got to the airport departures at 5:03 with his plane leaving at 6PM for Memphis. I got back to the hotel at 5:35AM and hopped back in bed and stayed there till 9:30AM. I was finally able to get some sleep.

Joe worked on detailing my Lexus again. He loves a clean car as I had stated before. Joe advised me that Emory had called and wanted to know when he was coming to Atlanta. Joe told that person to contact MDACC which I knew would delay getting an appointment and hospital chemo date.  I called t Emory back and told them what I anticipate will occur and what I would like to happen. She had to speak with Dr Winton and get back with us. Within 15 minutes I got a definite schedule appointment time for everything. Joe should get a release from Romaguera on Monday December 13 if all the tests are OK. We would drive over two days, 12/14 and 12/15 back to Atlanta to make it easier on the both of us with an overnight stay in Biloxi, the half way point. Joe would have lab tests at 8AM the next day on Thursday, 12/16. Meet with Dr. Winton at 9AM and then be admitted to Emory the same day. If Joe is in the hospital for the full 7 days, then he would get out on 12/23 IN TIME FOR CHRISTMAS at home. How awesome is THAT! Praise God for whom all blessings flow. I pray this plan all works out. It is the best that we could possibly hope for. I also found out that Keith and his girlfriend and my youngest son, Mike, will be home for Christmas. My heart is overfilled with joy. What a Merry Christmas it will be! We will have dinner with Joe's family on Christmas Day evening. What an amazing Thankful time that will be!

Joe's sister, Donna and her hubbie, Rick and daughter, Jessie went to our home on Sunday and put together the new TV stand and HD TV together for Joe. He will be so happy about that since I know that he would have an impossible time trying to do that. I am so thankful for their work and such a great gift to Joe. They saw one of my terrific neighbors, the Bennetts, who they thanked for watching and taking care of our home. Joe and I are so truly blessed that it is hard to hold the joy in my heart.

So that is the up to date happenings with Joe and me. Joe is asking me what place have a picked out tonight for dinner. Right now, I do not have a clue. I will do my research.

Oh I forgot about that we did today. Joe and I took Max to Memorial Park and walked the nature trail. It is Houston's huge signature park that is used happily by the Houstonians with walking, running, rollerblading, walking babies in strollers and biking. The place has those awesome craggedily huge live oak trees that I love. I will post a photo of Joe at the park in front of those trees with Max. It was gorgeous today and a perfect place to walk with temperatures around 60 and bright blue cloudless skies. It is good for Joe to walk as much as possible so far he is keeping it up.

For lunch today we had the best ever Chicken Salad sandwiches on Jewish Rye Bread at Kenny and Ziggy's on Post Oak Boulevard. We split the order since I had read the sandwiches are so huge and expensive that one should share. The sandwich cost $13.95. It had tender chunks of white meat chicken with mayo and fixings. It was creamy and so tasty. One thing that puzzled me is that they had no potato chips or fries there but a choice of potato salad, macaroni salad or cole slaw. Strange to me!

Well Joe has cleaned himself up shaved and is ready to go to dinner. I can not keep the hungry man waiting.

Countdown to home is 9 days! God willing!


Friday, December 3, 2010

The Light Comes Shining Through

Wednesday we have the full day off from MDACC which would mean we did a bunch of nothing. Something like a Seinfeld day. After Panera we took Max to the dog park where he ran with the other mutts and pedigrees. Some dogs were slender muscular specimens. Some had long hair, short hair, wiry curly hair. Some went flying into the water. Some had graceful dives. Some just put their paws in the water. There were a few dogs who liked to roll in the mud. Some of the wet dogs took a liking to me and jumped on my lap or shook all the water off their fur giving me a bath. There was one dog who came from behind me while I was sitting and poke him head between my knees for some loving. There was an adorable three month old puppy who I had to hold and do a cuddle love. How could you resist! Joe walked with Max twice back and forth along the length of the park to get his legs some exercise. Max dutifully followed Joe down the path.

During rush hour last night there was a major back up of traffic on the interstates and arteries since a gasoline truck overturned on US59, a major interstate type highway. There was no way that I was going to even think about trying to drive some place for dinner. Luckily we are staying near some nice places so tonight we walked down West Loop South where it meets San Felipe Boulevard and ate at  Yia Yia Mary's Greek Kitchen. I was surprise to find that it was not a fancy smancy place but a more casual atmosphere but yet it had a very rich presence from the street. Several people had recommended the place so it seemed like a great idea last night to walk to it. The service and meal was excellent so it ended up being a good choice. Joe had grilled shrimp with orzo covered with Greek tomato sauce which he really enjoyed. I had grilled lamp chops with a lemon potato and green beans Greco style. I loved the lamb chops and the beans but the lemon potato was not my type of dish but it was edible. Other people had raved about the lemon potato but I suppose it is a matter of taste. It was like a Idaho Baking Potato peeled and boiled with lemon juice. Joe insisted on dessert and it proved to be a real winner which was a Cheesecake with some of that Greek Phyllo pastry crumbled on top. It was a nice cool evening walking back to the hotel and the traffic was still backed up on all the arteries at 8:30PM. We felt sorry for the working people trying to get home.

Today which is Thursday was Joe's check in day at MDACC. We started at Panera Bread where Joe has taken a real liking to the three cheese souffle and the fresh orange juice. I still stick with my sesame bagel. We had an hour and a half till the first appointment at 11AM so I took the back roads over to Kirby. The back roads have some really beautifully architecturally designed homes and gardens. On both sides on the road are huge oak trees making a canopy over the road. It is stunning. So many older smaller home where the land is worth more than the house, people tear down the little old one and put up mansions and use the lot to its fullest. No house in the same. I just love this area of Houston. On Kirby we stopped by the $4.00 automatic car wash with a free 4 minute DIY vacuum suction. Joe loves a clear car so I made him a happy man by stopping at the car wash without him asking me to. Afterwards we drove down more of the side streets towards the Texas Medical Center and passed through The Museum District. There are probably ten different museums that are around the perimeter of pretty Hermann Park with the large majestic oaks, gardens and fountains. One feels like you are in Europe in this area. Well done to the City of Houston!

We arrived exactly on time for Joe's 11AM appointment for Fast Track Labs and Vitals. I had to remind Joe to get his Vitals completed after the Labs. You would think he would remember to do that by now. There was another hour and a half to kill before checking in with the clinical nurse to review Joe's Lab tests so I took Joe over the cross bridge to The Rotary House which is an upscale hotel made a part of the Medical Center for patients. On the second floor Joe wanted to eat at The Oaks which is a sit down restaurant where we escaped the hospital environment. We both had some excellent Fish and Chips. Joe wisely passed on the Cole Slaw since he is not permitted to eat uncooked veggies. After eating lunch I stopped by the Rotary Gift Shop to buy some Christmas presents since I will not have time this year to do it for obvious reasons. Bad me! Instead of Christmas presents I bought myself a cool black hat to compete with Jackie Ripley at church (JOKE). I also bought myself a zebra sequenced baseball cap with sunglasses  to match. Now I look so cool. I already got several compliments on my Annie Hall look today. Joe thought it looked cute so I scored there.

Back across the bridge to MDACC for the medical lymphoma consultation appointment at 1PM. One thing that one must get used to being a cancer patient is WAITING! We saw the clinical male nurse at 1:40PM and he also said Joe's counts were stable but they would go down significantly in the next several days where he was sure that Joe would need a  blood transfusion and a possible platelet transfusion. I tried to pin him down on when we could go back to home to Atlanta and he would not answer that question since it was up to Romaguera. I refused to leave MDACC today until I got a more solid answer. He said to request to see Goley Richardson, Romaguera's nurse to answer the questions I had. He stated that he would make a notation in the medical file to have Goley call us but honestly that was not good enough for me. Joe had an echo-cardiogram scheduled for 2PM so we could not ask to see Goley then since we had to get to the next area. Again, we did the same thing we learned how to do - WAIT! Joe got called in for the echo-cardiogram at 2:40 and it takes about 40 minutes to complete so I told Joe that I was going to the other gift shops to shop. This time I was successful at getting some unique Christmas gifts and thank you gifts. I also went to the volunteer Christmas concession and bought two sets of Christmas cards that were wonderfully and creatively designed by the children with cancer. It benefits the hospital charitable causes. Even the other gifts I bought at the other hospital gift shops, the profits go to assist the patients special needs. Here is where spending money feels good and really does good. I had just sat back down at the 6th floor lab waiting area when Joe came walking back in. Perfect timing! We only had to walk a short way over to the Lymphoma Clinic to wait our turn to speak with Goley which of course we WAITED for an hour for that to happen but we were not going anywhere till I got the schedule correct and agreed to.

Sooooo, it looks like we will be back in  our Stone Mountain home on the evening of 12/15.  In the mean time there will be lots of visits to the hospital for blood work, X-Rays, Bone Marrow Biopsies, CT Scans, a short round of chemo one afternoon, transfusions and a final visit with Romageura on 12/13. If Joe's counts are stable and there is nothing weird with the tests given, Joe will be released late that day. It will take us two days to drive home. Once we do get home, the next day, 12/16, will be a visit to Emory Winship Cancer Institute with Dr. Winton and team then hopefully an in-patient admission on 12/17 at Emory for a week of chemo with Joe being released on Christmas Eve. God willing. I am selfish in that I do not want Joe in the hospital over another family holiday since it was rough over the Thanksgiving week. But, again, if it has to be, then it will be. God will be showing us the way.

While I was doing one of the many waitings, I e-mailed Dr Winton and his staff at Emory about trying to coordinate and mesh this all together. Hopefully I will hear from him tomorrow since he seems really good about answering e-mails. I know that Joe's medical files are being processed since Emory contacted Goley and request some of the records she had. The Medical Records department is getting the entire medical file over to Emory since we made a formal request on Tuesday when Joe got released. The oxygen machines and tanks will be picked up tomorrow so that is another thing out of the way.

As I was driving back to the hotel, my oldest son, Keith, called who lives in Memphis stating that he will be coming to Houston for the weekend to be with us. Wow, that added whipped cream to the day. Both Joe and I are thrilled that he is coming, A blessed gift from God comes our direction again.

Next I got a text picture from my youngest son, Mike, of my youngest granddaughter, Emily, sitting on her couch playing a computer game. Joe and I both got to speak with Emily which always brings smiles to our faces. Grandchildren are the most wonderful gifts from Heaven where a special love blossoms immediately when they are born. Mike sounded great and that makes my soul happy also. It was the cherry on top of the whipped cream.

Joe wanted a good hamburger tonight. I had read about Pappa's Burger on since I have been in Houston so I told Joe I knew just the place to have a great burger. It was NOT great! It was FANTASTIC! Freshly generous ground sirloin cooked to medium rare on a large fresh toasted bun and fresh french fries that are so tasty and crispy that I will craved these things forever. If you come to Houston and want a guarantee great fresh hamburger, this is the place without a doubt. It is located about 7 blocks from The Galleria. Joe and I were in Hamburger Heaven!

We were stuffed when we arrived back at the hotel. Joe had to rush to the boy's room while I took Max out to do his business. We sat down on the couch and I put lotion on Joe's legs and feet as well as his hands and arms because the chemo has dried up his skin and it shriveled up some. The Gold Bond Ultimate Shea Butter really has helped plus it make Joe swoon and totally relaxes him. He is now sound asleep in bed.

The Lord has blessed this day with happy moments. We are thankful and humbled by His constant gifts.

Peace be with you. May the Lord hold you and your loved ones in His spirit as you battle your various wars and have HOPE. I love you all.