12/29/10 CHANGE IS HARD

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 Amazon.com. 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!