Sunday, January 30, 2011

01/20/11 All is Calm!

It is great to be able to say that all is calm. Joe's chemotherapy Part B of the HyperCVAD-R is going very smoothly with no surprises. I am very happy to state that the nursing staff on 6th floor of the E Wing did a splendid job this time. They were very thorough with details and so very kind to both Joe and me. I mentioned to one of the nurses, Maura, that I noticed that the blood tests were not testing Joe's magnesium level. She listened to me as I stated that Joe has had issues on the past with low magnesium and was taking magnesium oxide supplements at home. Maura came back later into the room and thanked me for mentioning the issue with magnesium and sure enough Joe's level was slightly low. She added an IV of magnesium sulfate to the tree of life. It was a good catch and seem appreciative that I brought it up. When they changed shifts at 7PM, she advised the next nurse about the magnesium and that I was the one who made her aware of it. Atta girl, Miss Bonnie.

Joe has been doing so nicely on the chemo. The only side effect that we noticed was that his feet and ankles swelled up like they have done previously. Joe uses the electric cuffs for the ankles that pulsates pressure which he finds relaxing so he does not mind using them. He has had such a good attitude and has been staying positive which makes me so proud of him.

The last bag of chemo, cytarabine, was started at 4PM today and ended two hours later. The night nurse will take a blood sample at 2AM that will be reviewed by the floor oncologist in the morning. Joe should be released sometime Monday. The specific time is impossible to predict which keeps us both from doing anything else.

That is it for now! Good night with sweet dreams and a restful sleep to all. Thank you Lord for the blessings you have given us. We are humbled from all that You do to help travel the roads least taken.


Friday, January 28, 2011


Joe was suppose to be admitted to Emory University Hospital at 10:40 AM on Thursday, January 27. The Admissions Office had called us before we left home to advise us to stay home till they call us since the hospital room was not ready. It was such a contrast from the last admissions experience where we waited four to five hours for a room to open up. I liked the way this was handled so much better. Joe got tired of waiting around at home and suggested we have lunch near the hospital then head over there after wards. Panera Bread in Emory Village was our choice for lunch where we both had soup and a half a sandwich. It was jammed packed with patrons for lunch not sparse like breakfast.

It was about 3:30 when we headed over to the Emory Hospital parking deck. As we got out of our car, the Admissions Office called and told us to come on in. Joe went into the Infusion Lab for his blood draw as I headed to the Admissions Office with the luggage. Joe met me there about 4Pm. I purchased a five day in and out parking pass for $25.00 where the normal cost for five days of parking would be $60. At 4:30 PM the Admissions escort took Joe in a wheelchair as I followed to the 6th Floor off the E Elevator. It was the first time that Joe agreed to be taken upstairs in an elevator.

About an hour later the floor hematologist/oncologist stopped by to tell us that the chemo will proceed as normal. I stated. "Normal?" If it were normal, Joe was to receive Part B of the HyperCVAD-R. The Doctor explained that Emory was able to find some Cytarabine since Joe did not need a bunch of it. There had been a staff meeting that morning where the shortage was discussed and SURPRISE, there was some for Joe. I am so glad that neither Joe nor I stressed about the shortage since we knew we had no control over that situation.

The first infusion started at about 8:30PM with Rituxan which is the monoclonal antibody. I suppose it lasted a couple of hours. I went home about 11PM. Joe had gotten his benedryl and tylenol which put him in la la sleepy land. They started the infusion of the Methrotrexate at 4AM which would last about 24 hours.

I started Friday with my visit to Ms. Kim's Bagel shop on Five Forks Trickum where I saw Neal Nicholson who was unusually quiet thus I knew that he was not feeling good. After the perfect bagel I went over to Bally's Total Fitness and spent 35 minutes on the tandem cycle where I completed a little over 13 miles. At 11AM I had my hour of physical therapy on my shoulder and arm at Benchmark in Tucker which consisted of lots of pulley action, specific stretching movements, cycle movements with my arms, stretching with a thick rubber band. Some of the exercises are easy and some hurt like crazy. I was surprise that one particular movement was not possible for me to do but they said that it would come in time. A solo lunch at Chick Fillet in Tucker was fast, decent and nearby.

I headed back home to get a long hot relaxing shower and take care of Max who has been so sweet and patient. I wrapped up an Amazon return item of a Kindle cover where the light did not work. They had replaced it right away. Amazon has good customer service. I spoke to a dear friend in Virginia using SKYPE which was only the second time that I used it. I packed up the stuff Joe requested that he needed. Just as I got on US78, I called Joe who requested a few more items so I turned around and picked those items up. At Publix I picked up some fresh fruit, cashews and Orange Juice to take to the hospital. I dropped off the Amazon return package at the Tucker Post Office.

I got to Joe's Room about 4PM and he looked relaxed sitting in the chair watching TV. He was happy to see that I remembered to bring all the things he wanted and some bonus treats. Nurses were in and out of his room regularly checking vital signs and changing empty IV bags. Joe was given two units of A+ red blood cells since his hemoglobin had dropped to 7.6. When the HG gets to 8.1 or below, they transfuse blood. No platelets were needed since they were at 111. We expected Joe to need Red Blood Cells since he has needed it each time that he has had Rituxan.

Joe did not want hospital food for dinner and requested pizza. I had a pizza delivered from Capozzi's which Joe really enjoyed. We watched TV but nothing really caught his interest so he would doze off here and there. At 10:30 PM Joe says he was tired and wanted to go to sleep for the night. I tucked him in and he felt warm to my touch and his face was flushed red. I took his temperature but it was normal. I begged him to call me if he felt bad during the night and I would come back over. I also told him that it was not the time to be brave and that if he felt bad that he should page the nurse and they would take care of him. I hope he keeps his promise to me. His room is at the end of the floor in the corner so it is nice and quiet back there. There is a zero view out the window since it faces other hospital walls.

It is nice to have a calm routine day. I pray that will continue.


Tuesday, January 25, 2011

1/25/11 Chemo Drug Shortage and Dr calls us

Joe listened to his body today by resting most of the day and even taking a three hour nap on a dreary gray rainy day and night in Georgia. Winter is the rainy time of the year in Georgia that rises our lakes that supply our water in the thirsty growing, sprawling city of Atlanta.

Last week I had called Caremark Specialty Drugs to refill Joe's Neupogin which is used to boost the growth of healthy white blood cells after the chemo eats the bad and good ones. It is sent in a refrigerated Styrofoam package to keep the prefilled syringes fresh. There was a snag. United Health Care was requiring it to be pre-approved again which I suppose it was because it is a new year. The drug should had arrived last Thursday but there was a bottleneck between the doctor's office and Caremark. Today I got the both talking to each other to break the bottleneck. The drug will be here tomorrow. One must continue to stay on top of things all the time. Yes, that can be stressful but the results can be life saving.

Joe had left his favorite yellow Alaska jacket somewhere yesterday so this morning we went back to all the places we visited yesterday to track it down. Joe would drop me off at the front door of the visited places and I would run in and so a search and rescue. Finally, we found his jacket at the very first place we stopped at before I had dropped him off yesterday at Winship/Emory to get his blood tested. Yep, he left it at Panera Bread. The manager had it in his office. When I hopped back into his beloved red Ford pick up truck, he smiled from ear to ear. Joe loves that jacket. It is just the right weight for the winter weather in Georgia.

About 4PM this afternoon we got an unexpected phone call from Dr. Winton at Winship/Emory. He told us that Emory had no cytarabine which is one of the chemo drugs used in HyperCVAD-R Part B. There is a shortage of the drug and is on back order all over the country. There are three companies that produce the drug. On the FDA website that lists drug shortages it stated on two of the drug companies that there are manufacturing issues. The other company stated there was raw material issues. I had read in the last month that there was also a shortage of Doxorubicin which is nicknamed the "Red Devil". It is also used in Part B of Joe's chemo regimen. This shortage affects thousands of people taking chemo for cancer, not just Joe. I am very skeptical of the shortage and concern whether the drug companies are manipulating the supply and demand to raise the costs which in turn would raise their profits. I pray that I am wrong about this. I contacted the Leukemia and Lymphoma Society and asked them if they were aware of the shortage and they are. They suggested I call Bedford Pharmaceuticals tomorrow and make the inquiry. You know I will and I report what they say which will be probably a canned prescript response.

Impressively Dr. Winton called Dr. Romaguera at MD Anderson Cancer Center to discuss the cytarabine drug shortage. Romaguera was unaware if there was a shortage at MDACC. Romaguera was the doctor who developed the successful chemotherapy for Mantle Cell Lymphoma. Romaguera told Winton that he had no issue of Joe getting Part A again starting this Thursday and Joe would do just fine with that. He stated there are some patients who do not tolerate Part B and just did Part A and they were able to get them into remission. Winton wanted to get out OK on it and we were fine with it especially since he consulted with Romaguera, the expert.

Winton also discussed with Romaguera Joe's seizure on 1/21 from the low phosphorus levels since he had never seen that happened before. Romaguera also stated that he had not either with any of his patients. He looked back on Joe's phosphorus graphs at MDACC and found out that happened once before with Joe on day 13 after the start of chemo which is exactly the day it happened at Emory. They both think it is because of Joe's other rare blood bone marrow disease called Myelofibrosis. They think after the chemo the bone marrow is overworking producing blood that it feeding off of the phosphorus at high levels depleting it. With giving Joe a phosphorus supplement starting on day 8 of the chemo regimen should replace the needed phosphorus. Both doctors are learning so much from Joe's medical case since it is extremely rare to have both mantle cell lymphoma and myelofibrosis. As far as they know, Joe is the only one who has that combination right now. Yep, Joe is a rare breed and his case will surely be written up in the medical journals.

I had no intention of writing the blog tonight but I thought that this was an interesting development that was worth an update. It is easier to remember details if I write it down right away and this was important information to share.


Monday, January 24, 2011

01/24/11 What caused the visit to ER?!? Update on Bonnie.

It was a very interesting visit with Dr Winton at Winship/Emory today! I was able to be there at 12:30 PM after my Shoulder appointment just when the doctor had just entered the room to speak with Joe. Joe's phosphorus level on Thursday afternoon was at 1.8. Ten hours later at 1:40 AM in the ER on Friday 1/21 his phosphorus level dropped dramatically and critically to only .9 (normal is 2.5-4.5). Doctor stated he had never seen them happen before and that Joe's bone marrow is overly active causing it to use excessive amounts of phosphorus and magnesium. They gave him an IV of phosphorus and his last blood result for phosphorus at 4:30PM on 1/21 was now 4.5 thus they released him from the ER.

In the future Joe will be given a phosphorus supplement starting on Day 8 (day 1 is when chemo start) to see if it can be normalized. I feel comfortable that the seizure was not preventable from the information known on the tests earlier in the day.

Dr. Winton is calling in an ENT specialist about Joe's stubborn sinusitis checking to make sure that it is not a fungal infection instead. Joe goes back into Emory for Part B of HyperCVAD-R this Thursday. Also the doctor said the higher White Blood Count is NOT Lymphoma and no lymphoma is being seem right how. We agreed to lessen the days of Neupogin to only 5 days starting 24 hours after discharge from Emory chemo treatments. We also let the Dr. know how Emory ER wanted Joe to be transferred to another hospital. Winton said that is a BIG NO with Joe's situation and should never happen. If this were to happen again, contact him immediately and he will stop it. We also told him about the disorganized ER area and the dirty chemo tree. He hates when patients have to go to ER with the flu epidemic going on right now in Georgia and goodness knows what else. At least Joe did wear his mask and we were in an ER exam room with three walls and a curtain.

Today, 1/24, Joe's blood counts and chemistry levels improved wonderfully. With his WBC at 12.1 (on the high side but not excessively.)His RBC at 3.38 improved since 1/21. His hemoglobin improves to 10.6 from 9.3. His hematocrit went from 29.73 to 31.9 which is the highest level since 12/2/10. Joe's platelets are at a respectful 139 which is a smidgeon below normal.

My orthopedic Dr. Mason at Emory Orthopedic and Spine Center reviewed my MRI from Friday. He stated that there appeared to be a slight tear of the rotator cuff and inflammation in the joint. He got the ultrasound machine to pin point where to put two shots into the joint. Dr Garcia's worked better for me since he put the steroid shot in the joint which did give me more movement and a lot less pain. When Dr. Mason gave me the steroid shot it was outside the joint and at the rotator cuff tendons which did nothing, He is convinced the pain is from the actual joint because of that thus the two shots in the joint today of which one was a steroid and the other a nerve blocker. He also prescribe for me physical therapy twice a week with home exercises but if I feel a bunch of pain to stop and come see him since it is probably a frozen shoulder. Since I had hurt my arm tugging luggage in Europe, I would stop using the arm to stop the pain thus it would cause the shoulder to freeze up. Back in 1988, I had a frozen shoulder from a car accident in 1987 where they put me to sleep that manipulated it which is basically breaking it apart. When I woke up, I was in tremendous amount of pain and yelling where they finally gave me a nerve block. Nowadays they give the nerve block before one wakes up. Thank God since that moment is etched in my memory forever. So, it is six weeks of physical therapy then a follow up appointment with Dr. Mason. AMEN.

If anyone is interested in reviewing the Excel spreadsheet that was created when we started this journey, please send me an e-mail.

To Joe’s Prayer Army, please keep the prayers going . You are so appreciated and valued.

God be with you and your loved ones!

Friday, January 21, 2011

1/21/11 Setback 7 hours later

Well, so much for a break which lasted a whopping 6 hours. About 12:30 AM Max was barking away in the living room where Joe watches TV, Joe was in a seizure and had fallen off the couch and was laying face down on the floor. I could see that his left jawbone had bruise and was swollen and he has bleeding from his right elbow so I called the 24 hour phone number for Winship Cancer Institute. A doctor called me back within a few minutes and we decided to wait till he was conscious and able to move which was about 15 minutes later. I got him into the car and drove to the Emory ER which took him in immediately, They did extensive blood tests, CAT Scan, X-Rays, urine analysis and EKG. The nurse came back about 3AM and stated that Joe was low on phosphorus and that the CAT scan showed sinusitis which he has had for quite awhile and has not been able to shake it loose, They told us that Joe would be transferred to the hospital upstairs for observation given an IV for phosphorus and antibiotics. After waiting for hours and no room upstairs they gave Joe an IV in the ER. I had to leave the ER at 11am to get some sleep and take care of Max. I also had my MRI appointment at 4:30. Joe was released from the ER at 4:45 pm. I did not get there till 5:20pm so I missed the rest of the doctor visits. Joe claims the ER doctor told him it was from low phosphorus levels, the chemo and sinusitis that it was the perfect storm. Joe also told me that the ER requested permission to move him to Emory at John’s Creek or any other Emory Hospital since they needed the ER room. Thank goodness, Joe told them NO!

Joe and I are not happy about all of this since yesterday afternoon when we left Dr Winton’s office that the information the ER found out was the same information Winton’s office had. Why did Joe have to go into a seizure to realize something was not right? They should have been more proactive like MDACC. His white blood cells jumped up today in the ER from the previous day’s regular clinic visit, so now we had to stop the Neupogin immediately. We need to pick up a special antibiotic for the sinusitis that just won't go away. Since I was not there, Joe did not get a copy of the recent blood tests. He has to go back to the clinic on Monday to have another blood test and phosphorus levels at the same time I have my doctor's appointment to go over the MRI of my shoulder. The weather report states a possibility of another winter storm on Monday. Okay dear Lord, we need your help here.

We got home about 7PM so it was a very long medical bump in the road for Joe. One hour we are delighted with his progress and then within 7 hours we are rushing to the ER.

There is another huge concern I have. Normally the neupogin is stated with 24 to 48 hours after leaving the chemo hospital visit. Since Joe’s white blood counts were increasing so fast with the neupogin, I held it off for about a week. I had given him only three days of neupogin shots. On Thursday afternoon they were at 3.2 and we were told to give him neupogin shots only for two more days. Now then, from the ER blood tests, his white blood count was now above normal. As to what it really is, I do not know since Joe failed to get a copy of the blood tests and I was not there even though Joe knows that I always ask for a copy of the blood tests after each draw. Jessica Neely, Winton’s PA, met with Joe near the pharmacy where she told him to stop the neupogin shots, the levaquin, diflucan, and acyclovir immediately. She would call the CVS pharmacy for the different antibiotic that he is to take for the sinusitis. Joe has gone to CVS to pick it up.

Joe has been gone for over an hour to pick up the drug. I called the CVS where he told me that he gave Jessica the phone number was. It was not there nor the CVS on Highway 78. I had visions of him wrecked along the way someplace since he was not answering his phone. One CVS tracked him to the CVS on DeShong Rd which is a good distance from us and that he was just picking up the drug at the drive in window. Another reason why I must be with Joe when he is talking to medical personnel. This is nerve wracking.

Thursday, January 20, 2011

01/20/11 !!!!!!!!PROGRESS!!!!!!!

On Tuesday it was the day to visit the Infusion Department at Winship/Emory. The waiting room was wall to wall of people and caregivers where the crowd overflowed into the hallways. The backlog of patients was from the Ice Snow storm that paralyzed the Atlanta area last week along with Martin Luther King Jr Holiday on Monday. The wait was long. A nurse made an announcement that all 88 infusion chairs were in use and that they would get to each patient ASAP. It was about 5PM when we finally got to the back where the infusions are done. Joe's white blood cells were low at 1.4 thus I would start Joe on the neupogin shots daily. Joe's hemoglobin was at 8.6 so no red blood cells would be needed. Joe's platelets were at 82 thus a platelet transfusion was not necessary. We were delighted that Joe escaped transfusions or we would not have gotten home till 11PM at best.

Joe's next visit to Winship/Emory was today, Thursday, January 20 which turned out to be a very special day for us. Since the Infusion Lab completed a Type and Cross on Tuesday, we could escape the mob scene at the Infusion Department by going to the 2nd floor lab which was only a 10 minute wait rather than an hour and fifteen minute wait. Next on the schedule was Dr. Winton and his Physician Assistant, Jessica Neely. Jessica is such a delight to be around. She does all the leg work for Dr.Winton. She also agreed with me that the lab needed to get Joe's magnesium, phosphorus and uric acid levels so she called the lab requesting they get those completed ASAP. Joe told her (with my prodding) about the cramping of his fingers fifteen minutes at a time about an hour after he eats. She measured Joe's spleen which had decreased to 14 cm from a high point of 30 cm. We both grinned from ear to ear with that news since we have been trying to get that spleen smaller for the last three years. Joe's muscle mass is still small but thankfully he has been eating quite well. Jessica gave me a copy of the CBC (blood report) and stated that Joe did not need any transfusions. I anxiously looked at the report. After only two days since his last CBC, Joe's WBC improved to 3.2 with only three days of neupogin shots. Joe's RBC improved to 3.18. His hemoglobin went to a respectful 9.4. The hematocrit increased to 28.6. The platelets jumped to 107. It was good news indeed.

Dr. Winton came in and told us that Joe was doing GREAT in spite of the Myelofibrosis (MF-3) which was a concern of both cancer centers. Winton stated with Joe's neutrophil percentage being 16% and his red blood cells being 3.18 would make Joe's absolute neutrophil count at .51. Winton stated that being over .50 made him delighted with the results. He told us that we would not have to come back until a week from today when he would be readmitted to Emory for Part b of the HyperCVAD-R chemotherapy for about five days. Winton also instructed Joe to stop taking the neupogin and the antibiotics with the last day being Saturday. He stated that Jessica would contact us upon getting the results of the magnesium, phosphorus and uric acid to give us further instructions. Our next stop would be the Infusion Department for the interim Vincristine chemotherapy.

We took the elevator down to the Plaza level of the Winship Cancer Institute where the Infusion Department is located. It was a pleasant sight to see only five patients waiting to be called to have their infusions. We got beeped quickly and Joe was seated in his chair about 3:15PM but we had to wait till Winton's office faxed the chemo instructions and then for them to get the Vincristine. The RN asked Joe initially what he was there for and Joe says, "You tell me!" She proceeds to tell him that it was for platelets. I just do not understand why Joe does that. I told her that he was there for Vincristine. After she left, I asked Joe why did he ask her, "You tell me!" He mumbled some words to me that I would not want to decipher with that sneer of his. One these days he is going to harm himself by being a pain in the tush. Joe was through with the chemo about 4:45pm. We hung around waiting to get the rest of the lab results and finally for them about 5:30pm. A brief stop at the Emory Pharmacy was done to pick up Joe's needed cough medicine. We headed to the parking garage at 5:45PM when I got an e-mail from Jessica stating that Joe's phosphorus levels were low but it was not considered low enough to cause the cramping in his fingers. His phosphorus level was at 1.8 whereas normal is between 2.4 to 4.7. Winton's instructions were that Joe should drink 2 glasses of milk a day. The uric acid and magnesium levels were in the normal range. Joe's calcium level was 9.0 where as normal is between 8.9 and 10.3.

On the way home we stopped at Chili's for dinner on La Vista Road since Pig'N'Chick had not opened up yet where Dusty's BBQ used to be on Briarcliff and Clifton. As we waited for dinner, I went over and gave him a big hug and kiss since I was so happy with the news of today. It was our day to cheer good news and live happy for it, right now, since who knows the future holds.

Progress is the word of the day. Thank you to those who said prayers for Joe and me. God has been listening and we are so thankful.

Ciao and God be with all of you!

Sunday, January 16, 2011

1/16/11 THAW and RECOVERY

The HyperCVAD-R part A that Joe had at Emory last week has really wiped him out more than before. He told me two days after we got home that on Tuesday night of the day we came home, he had to crawl up the stairs to the bedroom since he did not have the strength to climb the stairs. It is one of the things Joe does that drives me crazy, withholding information from me. He rested quite a bit Wednesday, Thursday and Friday and most of Saturday.

On Thursday with Joe' s insistence we went to lunch at Chick Fillet and stopped by Publix for things we needed and items Joe had a craven for such as grapes and sherbet which he hardly ate previously. I tried to discourage him but he was convinced we would be okay. There was a big crowd at the Chick Fillet and Publix. We walked out with about 10 bags of groceries.

Getting back to the house was the real adventure of the day. The ice was so thick in our subdivision. First I came in from Gunstock over to Musket Lane. I could not get the car up the same hill there after several tries. I slid backwards onto Gunstock where one of the neighbors got some entertainment watching me try to get up Gunstock. The key is trying to find some exposed pavement to get some traction. On the 5th try, I made it up!!!Yeah!

Silver Hill Road also had some thick ice but thankfully it is flat. Driving in this stuff it is best to let a car from the other direction make their way pass you since you have no idea if your car will skid and slide all over the place. In order to make it off of Silver Hill Road onto Musket Lane, I had to ignore the stop sign to keep my momentum going, If you stop, you are stuck. Now our last challenge would be Musket Court which has a steep hill which was covered with even a thicker layer of ice and there was no asphalt showing. I got a running start off of Musket Lane up to Musket Court and a fourth of the way up, I got suck. I moved backwards and forwards and turned the wheels hoping to get back down the hill since I was not totally sideways blocking the whole road. Finally slowly the car slid all the way down to Musket Lane. I tried that hill six times and Joe thought he could do better. Now it was Joe at the wheel. He got stuck big time where I had to get out of the car to push it till it would slide down the hill. The hard part was getting out of the car on the ice and trying to get to the driver's side of the car so I could push it down. I was holding onto the car for dear life since my feet kept sliding. No wonder there were so many people in the emergency rooms with broken bones and worse. Joe tried it two more times with the same result and decided to leave the car parked on Musket Lane. He parked on the opposite side of the street where He would have to walk on the ice which was downright treacherous. I tried to get him to park on the other side of the street where he could walk on the lawns that had some traction with crunching your feet through the layer of ice. Since Joe's platelets are so low, he has such a huge danger of bleeding. I was terrified of him falling on the ice that I had to yell at him like a madwoman since he was not listening to me. He got angry at me but I kept yelling till he got to safety on the lawns. He walked up the hill on the lawns forgetting about all the groceries in the car. I got in the car and moved it to the opposite side of the street to get the groceries and get some traction on the ice snow. I consolidated the ten bags of groceries to five and headed up the hill, huffing and puffing. By the time I made it to the house I was drenching in sweat. I fully admit that I was peeved at Joe.

Joe was on the couch in the living room. He made some type of statement and all I said was, "I don't want to hear it!" I kept my mouth shut thankfully for a change. I put all the groceries away and sat in the den and did not want to move for any reason for the rest of the day.

I could not believe that Joe went outside and got his tractor going. He completely paved the driveway clear of the ice snow. He should not be doing stuff like this but I do understand why he did it. It was have to some control over his life.

The alarm clock goes off at 6AM Friday morning since we had to be a Winship at Emory Infusion department for blood work and transfusions. Neither of us wanted to get out of bed but we did. Our car was at the bottom of the hill so we trekked down on the ice snow in the darkness where the only sounds were the crunching of our feet into the frozen matter and our huffing and puffing. Driving to Emory slowly on the slick roads were the key to safety. Panera Bread was open which was a shining star for us where we had a light breakfast before going over to Emory. Joe's appointment was for 7:30 AM and they finally called him for the blood draw at 8:30AM. Now we had to wait around for the results which they told him could be in thirty minutes which would be excellent. Every thing else was closed at Emory so all one could do was to wait in the waiting area. Surprise! They called Joe into the Infusion area at 9AM. The RN came over to us and stated that they were waiting for the full chemistry results. At 9:30 the RN came over and said Joe did not need any transfusions which was a shock. Joe's red blood counts got better and his platelets held decently. Celebration, come on! Joe was producing red blood cells.

I went upstairs to Dr. Winton's office receptionist since he was not there nor his nurse. I had wanted to know if Joe should start taking the neupogin shots but the white blood cells were in the normal range. I could not get an answer so I decided to hold off till Joe's next appointment. We were told when Joe checked out of the hospital to go to Winton's office and make a follow up appointment for him, blood tests and transfusion. The receptionist where Winton practices said no that you do it downstairs in the hematology department. I go back downstairs and got a sweet receptionist to went the extra mile to assist me. It turned out that all of Joe's appointments were set up and that Joe would come back on Tuesday afternoon for the blood and infusion. They were closed Monday for Martin Luther King's birthday. On Thursday afternoon he would see the doctor and get the chemo Vincristine The receptionist printed out the appointment list and that was great.

The sun was shining brightly on Friday which assisted in melting some of the ice snow. The roads were getting better but still the subdivision was awful. After leaving Emory Infusion we headed over to Emory Clinic hoping to see an internist for my Urinary Tract Infection. I was blessed that I only had to wait 15 minutes to see a resident. All I wanted was a prescription to kill the miserable burning infection. I got it and off we drove back home where we stopped for lunch and a stop at Kroger at Five Fork's Trickum and Rockbridge Road to fill my prescription. I sat Joe down over at the in store, Starbucks, to get his Caramel Frappacino and a Hot Chocolate for me. The clerk at the pharmacy that it would take an hour. I surely did not want to go home and get back out of the road especially since the Dekalb police had shut down Old Stone Mountain Road where a truck got stuck and a car was in the ditch. The officer said that it was even icier down the hill and further down. This is a very busy road and it is still impassable on Friday. Thankfully the prescription was ready in thirty minutes. We were not on our way home for the rest of the day and night. I got a fast start off of Musket Lane to get up the hill on Musket Court with a wee bit of slipping and spinning, I made it to the top and into our garage. SUCCESS!

Joe loves the Atlanta Falcons thus is the reason we already had tickets to the playoff game at the Dome against the Green Bay Packers for Saturday night at 8PM. My oldest son, Keith, who lives in Memphis was coming into town to go with us though his ticket was elsewhere. He was surprise by the amount of ice still on the roads after almost a week since the storm. We never had snow stay around so long.In the afternoon Joe and I easily made it over to Penneys Northlake to buy red Falcon jerseys for the game. We both got RYAN #2.

We left at home at 5:30 PM to start the evening with an Italian dinner at Capozzi's on Clairmont. Clifford already had our bottle of Pinot Grigio on ice since he knows I love it very cold. We all enjoyed our dinners. Joe had Chicken Parmesan which is said was terrific. I had my favorite, Chicken Marsala. After dinner I drove over the the Decatur MARTA station and dropped Joe and Keith off on Church Street so Joe would not have to walk very far. I found a parking spot near Decatur High School which would had been a difficult walk for Joe. I caught up with them both downstairs at the rails and of course, we had just missed the train which always seems to be the case but another train came in five minutes which was not too bad since Joe had a place to sit. We all also got seats on the train since by the time we got to Five Points it was people shoulder to shoulder. We always get off at the Vine City Station which is one station further down from the Dome. As we pulled from the Dome Station, we could see a huge line of people trying to get to the stairs and passage way to the Dome. It crept along. Thank goodness we were able to avoid that or Joe would have wiped out. At the Vine City Station we took the elevator to the street level and followed the crowd a short distance to the Dome entrance. Thankfully the security lines were not very long. We also used the elevator to get to the upper level seats. Our seats were in row 13 so Joe did not have to climb too much. Once he was in his seat, he stayed there the entire pathetic game. I ran back and forth to the concession stands to get whatever he wanted. He had another craving for a tub of popcorn and he ate every last kernel himself. By the third quarter we were losing so bad that we both wanted to leave. With stinky yellow Cheeseheads in front and back of us made the lost even more unbearable. It is hard to maintain one's cool as your team is being insulted by unwanted drunk guests. Keith and I were texting back and forth and decided that we would leave with 10 minutes left in the 4th quarter unless they scored two touchdowns. Hell would have to freeze over for that to happen since Green Pay was invincible and we played the worse game of the year at the wrong time. So many upsets this time! The mighty Patriots lost to the New York Jets this evening. I know my New York buddies are thrilled. We took the elevator down to the street level and followed the other early defeated fans over to MARTA. To make things harder, it took MARTA forever to get a train there. We all wanted to get home and drown our sorrows. Kidding! I neglected to remember to use the elevator at the Decatur station and Joe proceeded to follow me up the long stairs to the street level. Oh my! He was having such a difficult time and moving so slow. I ran down the steps to help him but he refused help and two men behind him offered to help him also but he also refused. I felt so bad about that but then again he could have gone to the elevator himself. We caught up with Keith and I instructed them to wait on Church Street while I got the car. All was well and after we got home, he rested on the couch and watched Saturday Night Live and whatever came on later which meant he was recovering from the active day.

Sunday Joe stayed home from church to get some more rest. It was calming for me to attend church and see all our wonderful members. When I got home, I told Joe about all the good wishes and thoughts that he was pleased and thankful to hear that he was not forgotten. I made a light lunch and watched some more football even though our team was eliminated.

I want to thank Joe's sister and brother for the text messages that we received from them at the game since they made us laugh in spite of us losing. I hate losing. I am not a good loser but within a few minutes, I am over it.

Joe's brother in law, Rick, stent placement was successful to open up the 90% blockage. He is doing great and we are all thankful since we care so much for Rick and Donna as well as all the girls.

I still have not heard from our friends in Queensland, Australia and keep praying that they are Okay. They are such wonderful fun people. They are strong and a resilient bunch but it still must be horrible for them with the massive historical floods.

Tomorrow is a great man's day of honor, Martin Luther King's birthday. Thinking of how he made the black people's voice be heard in a non-violent powerful way. It is even more unreal in today's turbulent times. All of us can learn what made him tick. He is a man for all ages, colors and nations.

Peace be with you and may God make your troubles go away!

Wednesday, January 12, 2011

01/12/11 OUT, SAFE, ICED IN

It seemed like forever to get Joe released from Emory on Tuesday after completed Part 3A of HyperCVAD-R. The hospital was short staffed because of the snow then the ice glaze on top of it. By 8AM Joe had the room all packed up. He was so anxious to get home. I tried to tell him to leave it alone or the time will seem to drag which it did. We left the room at about 2PM and stopped by the Emory Hospital Pharmacy to get a golden load of drugs. Since it is a new year, Joe has to pay $1200 of his deductible with AT&T which we met half of it at that on Tueday. Jeez! While we waited for the drugs to be prepared, I took the luggage and packed up the car and stopped by the Infusion Department to make Friday's blood test and transfusion appointment which will be at at early hour of 7:30 AM. Hopefully it will mean we get out faster. I am kind of worried about Emory running out of blood since there has been a plea at the bottom of the TV from the Red Cross that there is a dire need for blood. There was also a by line that stated the Emory Hospital was postponing operations because of the low blood supply. Something else is now added to my list of concerns. If anyone is in the Atlanta area, please give blood at Emory. You will save someone's life.

The roads around Emory were covered with a layer of ice so I drove about 15 mph. I knew that Joe was hungry and we were in luck when on North Decatur Road we saw that Melton's was open. Joe was really happy about that. There was quite a crowd there having lunch and also around the bar. Many of the people walked from their homes to get there since there was not that many cars parked in the parking lot. People were jovial and in a festive mood. We had yummy cheeseburgers perfectly cooked the way we love them.

US 78 is a 6 lane highway that had only one lane passable in each direction. Thank goodness it was still daylight since I could see that the highway was going to be a real issue after sunset. One hour after we got home, they had shut down US 78 down. God was watching over us. I had gotten off at Mountain Industrial to avoid the steep hills of Hugh Howell or Lilburn Stone Mountain Road. There was no way I could believe that it was possible to climb those roads under the icy conditions. We stopped by Publix so I could run in and get some needed supplies. Little did I know that we would be housebound for three days or I would have bought more food. Hugh Howell Road from Publix to our home had a thick layer of packed icy snow. I drove slow and kept my distance away from other cars. We could see some cars and pick up trucks that did not make it. They were stuck off the side of the road in weird directions. Turning onto Silver Hill Road and Gunstock was even worse. The real test was making it to our home on Musket Court since there is a steep hill coming off of Musket Lane. I started up the hill slowly and my wheels were spinning like crazy and the car twisting left and right. I made it to our home. The driveway had a two inch layer of packed ice. We were home safely. Thanks be to God.

I suppose it was about 4PM when we finally made it home. I realized that Joe was weak when he had difficulty making it up the two steps from the garage to the house. I told him to lay down on the couch and rest that I would take care of the unloading and unpacking. It kept me busy for quite awhile. The next chore was to set up his week of med's. I had to empty the one's that were there and figure out what they were so I could put them back in the right containers. It took me about an hour to get it all set up when I was finally able to sit down and rest. I was beat.

Dinner was spaghetti and meat sauce which was a gift from the owner of my maid service, Chris Ellis. I had frozen it and thank goodness we had it. It saved the night. Joe loves anything with tomato sauce. He ate what he could since his appetite is down quite a bit from all the excess fluid in poor body. It has made him uncomfortable and very tired. He laid back on the couch with orders from me to rest and do nothing. He said he was cold though he had two blankets on him and the thermostat at 73 degrees. I was worried that he had a fever so I took his temperature several times but it was normal. Many times during the night I would reach out to touch his forehead and face to make sure he was okay.

We stayed put all day Wednesday where Joe rested on the couch. His feet are still swollen and he feels congestion in his lungs from all the fluids they put into him. He had a craving for grapes, sherbet and cantaloupe so I decided to try to venture out to the grocery store. I did not get very far. I backed my car out of the garage and there I got stuck. The wheels spun and no matter how I tried to rock it, it would not budge an inch. The driveway is sheer ice. I had to leave my car haphazardly parked in the driveway and headed into the house to tell Joe that I was not going anywhere and that it might be days before this stuff thaws out.

Thanks to friends and neighbors leaving has staples that I had frozen when we first came home from Houston. I was able to make us some delicious grilled cheese sandwiches. I never tasted such good as those today! I also thawed out some spectacular homemade chicken soup to complement the sandwiches thanks again to Chris Ellis. Joe enjoyed it big time as I did too,

Charlie Lester, my dear neighbor, across the street called me and asked me if I needed help getting my car unstuck. It was not urgent and I told him that I intended to leave it that way. He asked me if we needed anything. I told him that I was trying to head to Public since Joe had craving for grapes and fresh fruit. Amazingly he walked over to our home and delivered us some of his grapes, delicious sweet pineapple, ripe oranges and a big red apple. Now, how sweet was that! How can one thank people enough for at they have done to help us. God will surely send them blessings.

For dinner tonight I thawed out the BBQ chicken that I had frozen from our open house way back in September. I made some fabulous chicken salad for dinner and almost as good as Kenny and Ziggy's in Houston. I was surprise how much chicken salad can be made out of three chicken breasts. So it anyone would like to stop by and have some chicken salad, come on by. We would love to have you.

We rented a movie on Comcast On Demand. "The Town" with Ben Affleck was very very good though it was a real shoot em up but it kept Joe's attention which is hard to do these days. He has a very short attention span. I rubbed his ankles and put ice on them to try to get the swelling down. He is still weak. I think that by Friday, he will be close to normal. He just needs lots of rest and fluids. Of course he still has the chemo cough and sinusitis. The cough medicine can make him constipated so I gave him some gentle stool softener with a laxative. It is a mild one and I know that it will give him relief.

As we were watching "The Town", Greg Bennett, our next store neighbor called to ask if I had an issue with my car. I told him that I was trying to get to the store and I got stuck in the driveway. He offered to drive me to the store but I would not hear of it since it was dark, below freezing and too dangerous. He offered to have Chad and him come over to get my car back into the garage. I protested but he said they were bored and would be glad to do it. They were successful with using a large bag of sand and Greg backed my car into the garage so it would be easier for me to get out. We need some real sunshine and some above freezing temperatures to melt this stuff. In the South we do not have the snow removal equipment like the North and Midwest has. What little there is, is used for the interstates and major roads. Forget about the secondary and surface streets. The removal is done by Mother Nature and she has not been cooperating.

Joe's brother in law, Rick Dangar, had a stent put in an artery this morning that was 90% blocked. He was smart enough to know something was wrong when he had been hiking at Amicola Falls recently when he had a pain in his chest. He had it checked out and it saved his life. Thank you Lord for answering our prayers for a safe procedure for Rick. He is spending only one night tonight in the hospital and will go home tomorrow. Pray for a fast and full recovery for Rick. He is so dear to Joe and me. He was the person who drove me to Houston when I was sick and in need.

It is really hard for Joe and I to believe that he only got out of the hospital yesterday when it truly feels like three days ago. I had to read my facebook page to prove to the both of us it was only yesterday. There is a massive disease happening in the Atlanta area called Cabin Fever. Parents are about to lose their minds with the kids being home bound for four days. They have run out of ideas to keep their kids busy. It is not possible. Kids are going to test their parents' patience to an extreme.

I had a huge laugh today with our dog. Max. I had taken him outside this afternoon to do his business. He had gone into the woods in our backyard where the snow had a thick layer of ice on it. Watching Max trying to get up the hill to the driveway was a sight to see since he could not get any traction. He slipped and went sideways and skidded back down the hill. He was smarter on the next try. He took one step at a time and came up sideways very slowly. I laughed so hard that I wish that I had gotten a video of his attempt. I am sure it would be a hit on the evening news and on You Tube. I will try to capture it tomorrow morning but I am betting that he will not even try to go to the backyard.

I am requesting prayers be said for the people of Queensland, Australia with their devastating and wide spread historical flooding. We have friends there and we have not heard from them. I am praying that they and their families are safe and their homes saved.

Good night my family and friends. Thank you for being there. We still need you.


Monday, January 10, 2011


I figured out what I could not go to sleep till about 3:30 AM. The Cokes that I drink at the hospital are not Caffeine Free as I have at home so I have added Caffeine Free Cokes to my packing list. Somehow I was still able to get up in time to shower and pack a suitcase to spend a few nights with Joe at Emory since a snow storm was approaching and should arrive at 8PM Sunday night. I was so happy to be able to attend Sunday church service at Eastminster Presbyterian with all the wonderful people who were the backbone of Joe's Prayer Army. It was good to give and get hugs and tell everyone that Joe was doing great and happy to be back in Atlanta though he was in the hospital.

After church I headed towards Emory but stopped at Publix to buy some of their amazing sandwiches. Our favorite is Ultimate Club. I picked up some OJ for Joe, Caffeine Free Coke for me, chips, chocolate chip cookies and some cold cuts with cheese. The store was packed with people and thankfully the store had all the registers manned with people.

Joe was happy that I was back and that I would be with him during the snowstorm. He would not have to worry about me driving back and forth from home. The Bennetts, one of our great neighbors, offered to take Max out for us while we are tied up here at Emory. How wonderful is that! We had our picnic lunch and watched the NFL playoff games. It was a surprise that Green Bay won and we would be playing them next Saturday at the Dome. Joe and I have tickets! Whoopee! He is so excited about it and gives him something to look forward to.

Joe gained 25 pounds in only two days from water retention so they had to give him lasix shots twice which makes one go pee a bunch. He has got to flush those chemicals and dead cells out of his body. His feet and ankles have swelled up and he has to wear the elastic hose as well as wrap some fabric around his lower legs where a machine expands and lets go to get his circulation going. Joe finds it very relaxing so he does not mind doing it. His blood counts have remain stable and surprisingly has not need another transfusion of red cells or platelets. His platelets have consistently been over 100. Good News. His white cells are still too high and that has got to get down. We still have a long road to travel on this dangerous journey.

Sunday evening the Southern Snow Storm arrived on time with anticipation. It was amazing how fast it came down and accumulated. Looking out the hospital room window we could see the rooftops become all white. It was nice to be warm, dry and with my honey. I changed into my jammies and warm socks and we both snuggled in the single bed and watched TV. He barely could stand watching Desperate Housewives and Brothers and Sisters. Joe swore they were repeats but they were new episodes. The last two chemos happened at 11PM with a short IV of vincristine followed by 24 hours of the Red Devil, doxorubican. We turned the lights out and went fast to sleep in each other arms. I would not have it any other way. We both find it very comforting.

We were greeted Monday morning with an early visit from Dr. McLemore who examine Joe and ordered the second shot of lasix but thought Joe was doing good. Praise God for these blessings. Local TV was manic with their coverage of the snowstorm that was on all day long that I thought I would lose my mind. Joe did not want the hospital food for lunch so I went searching to see what was opened at the hospital. All the cafeteria had was the normal hospital food such as pepper steak and fish. Yuck! I went to the other three snack bars and they were all closed. I walked over to the Emory University Food Court in the next building and it was also closed. I went back into the cafeteria and looked at the food available and I knew that it would not do for Joe. I came back to the room and started making phone calls to see if anyone in Emory Village was delivering and no luck. I called Publix which is only 1.5 miles away and they were open but they would be closing early. Joe loved the idea of another Publix sandwich and requested some cheesecake. Joe loves cheesecake with a passion. I decided to take the plunge and drive over there ever so very slowly about 15 mph. The roads were covered with snow mush and ice. I used all the winter driving skills I learned while I lived in Iceland for three years before I arrived in Atlanta in 1975. I was more worried about walking from the car to the store but I was so careful. I got our Ultimate Boarshead Subs on the multigrain bread and decided to buy a Roast Beef Sub for the evening meal since there was no way I was going to drive on sheer ice after sundown. I got Joe two pieces of chocolate pecan cheesecake, tiramasu, chips, and Cranberry juice. The juice was for me since I seem to have started a UTI. UGH! The Emory Pharmacist recommended some AZO to take and to drink lots of Cranberry Juice. It seems to be working since I am not burning when I urinate any more. Those things can be incredibly miserable.

Joe was delighted upon my safe return and we had another lunch feast. Today was a hard day to waste time with Snow TV on all channels. Finally tonight we had the Fiesta Bowl with Auburn against the Oregon. It is half time now and the score is 16-11 the SEC on top. Of course we have to root for the SEC. It is in our Southern blood but Auburn is not a part of our heart.

Joe just finished the Red Devil! YEAH! He is no longer hooked up to the LIFE TREE. He is IV line free. He was really looking forward to that.

Now it is time to get in my jammies and get next to Joe. It is where I belong.