2011 started with amazing blessings that have surprised me with their magnitude in such a short period of time.
Monday started with a lab test at Emory Winship that was scheduled for 9:00AM but Joe was not called back for the blood draw until 10:10 AM. I sure do not understand their scheduling system but I can tell you that it is does not work. Our follow up appointment with Dr. Winton at Winship at Emory was not until 11AM so we just went upstairs to wait since we both needed to wait until the blood results came in to know what needed to be done. I suppose it was about 11:15 when we were called into the exam room and met with the effervescent lovely Physician Assistant Jessica Neely. (Thank you Miss Nancy on straightening me out on Jessica's position.) Shockingly to Joe and me Jessica told us that Joe did NOT need any transfusions that his counts were decent enough though not normal. How wonderful it was for us to be able to go down to Jacksonville, be with our grandchildren for the weekend then come back to this news. Jessica advised us to stop the Neupogin shots that help produce white blood cells. They were below normal on Friday then shot up dramatically on Monday which was the only serious negative result. Joe's phosphorus level was low but they contributed that you the overactive bone marrow and that it would settle down when he comes for the next round of chemotherapy at Emory Hospital on Thursday, January 6. Joe will be in the hospital for five days since the chemo is very volatile and the patient needs to be observed carefully.
Joe and I were both giggly with excitement since we ended 2010 without a need for a transfusion and now we started 2011 without a need for any transfusions. We stopped for a lunch at Community BBQ on Clairmont where we had pulled pork sandwiches which were piled with tender lean pork. I just I ate the pork and left the bread on the plate. The helpings are huge there. I highly recommend their BBQ, seasoned fresh fries, homemade Mac n Cheese and their Potato Salad. It is another great neighborhood place and close to Emory Hospital.
After lunch we drove over to Executive Park to see Dr. Garcia-Correda at the Emory Orthopedic and Spine Center for my appointment at 2:30PM. Again, it was another long wait in the waiting room till I was called into the exam room. The intern interviewed and examine me first for quite awhile before Dr Garcia came in who also examined me for a long time. He was convinced the issue is in the shoulder joint and not the neck after his review of the neck MRI. Keep in mind that I started this process in August with the drab, no bedside manner, Dr Levy, when I complained about my shoulder at that time. The issue was that Dr Levy is a spine specialist and all he recommended was physical therapy and some steroids that did nothing. One month later I saw Dr Mason at the Northside group who is the shoulder sports specialist who also recommended physical therapy. He gave me a steroid shot in my shoulder joint that did nothing. Mason finally ordered a MRI on the neck since he was convinced it was the discs in the neck. When his nurse called me with the results, they were convinced the issue were my discs in the neck but I was now in Houston, Texas and I had to put it all on hold. Unfortunately the pain got worse and the ability to move my arm lessened dramatically. Joe wanted me to fly back to Atlanta to have it taken care of, but there was no way I could do that under the circumstances. We do what we have to do. Now Dr Garcia wanted to give me another shot of steroid in the shoulder joint, After a few minutes, I had more movement in the arm which convinced him it was my shoulder joint. He was going to order a MRI of the Shoulder Joint which I believe will show the problem area and then see Dr Mason again at Emory Northside. I feel like a yo-yo and Garcia knew that. but he seems to be so sure. I pray that it gets resolved since it has affected my physical life way more than I am happy with. All of this will happen next week.
Mike would drive up on Tuesday, January 4th to celebrate my 65th birthday with Joe and me. What a nice surprise! It certainly made me happy. Only thing to make me even happier if the girls were coming also but they were not.
Joe let me sleep super late on my birthday on the 4th which was glorious. We went to lunch at Goldberg's Deli in Dunwoody which is no where near the caliber of Kenny and Ziggy's in Houston. Someone needs to tell me where the BEST DELI in Atlanta is! Requirements are rare generous tender roast beef sandwiches, great creamy chicken salad along with creamy potato salad. Does it exist in Atlanta?
Mike arrived shortly before 7:00 PM on Tuesday so we headed to Outback Steaks on US78 in Stone Mountain for my birthday dinner. It was great to have Mike there to celebrate my day with Joe and me. I had hundreds of wonderful birthday wishes on Facebook and some very funny ones. I read them all and was thankful for everyone wishing me a Happy Birthday. Joe's gift to me was a Kindle and lighted cover. Mike got me an AMC gift card. Keith sent me a triple Mousse Chocolate Cheesecake. The granddaughters each made a wonderful card which I cherish.
Shortly before midnight on my birthday I got the best birthday gift possible. I logged onto the MD Anderson Cancer website to see if Joe's pathology report from his Bone Marrow Biopsy on 12/10/1010 was available. I had been going on line nearly everyday looking for it. It was there. I gasped when I read the report. I read it again and thought I was misreading it or it was somebody else's.
The Bone Marrow Diagnosis said specifically the following:
Persistent Primary Myelofibrosis, MF-3
No morphologic evidence of malignant lymphoma
Comment:
We performed flow cytometry immunophenotypic studies using bone marrow aspirate material from this specimen. These studies show that the lymphocytes are predominantly T-cells. Virtually no B Cells are present. No immunophenotypic support for malignant lymphoma.
Mike was sitting next to me when I read this. He was happy with me. As always I was cautiously optimistic and wanted Dr Romaguera and Dr Winton to give me their professional opinion but this had to be positive news. I was realistic to know that there are lymphoma cells still in Joe's body and we need to destroy all of them. I fired off an email to both of them before I went to bed.
Yep, when I woke up and read my e-mails this morning, both doctors had responded. They both basically said the same thing:
"Joe is having a great response to his initial therapy. Pre-treatment the mantle cells predominant, and now are below level of detection. Although this is very favorable, do not interpret this as complete disappearance of the disease - remember it starts with one cell, and when diagnosed patient has trillions of cells. The test used to detect mantle cells (flow cytometry) misses disease once there are less than 1 and 1000 malignant vs normal cells, and theoretically patients can have millions of persisting lymphoma cells, and we would not be able to find them. At the same time, I am very impressed with his initial response, but want you to understand why we keep treating beyond the point of being able to detect residual disease. I am cautiously optimistic.
Hope this helps. Be happy to explain this in more detail on next visit."
The day became brighter today with more hope that Joe could have more time on earth!
Today Joe and I enjoyed having massages done at Massage Envy in Dunwoody. The good news this morning that my arm was not hurting close to as had as the day before from the steroid shot. GREAT! I had emphasis on my neck, back, arms and shoulder. Yes, I do feel like it made a difference that I actually scheduled another massage for me next week. Joe had reflexology massage on his hands and arms. The operator also massaged his bald head which he enjoyed also. I am so pleased that he enjoyed it so much. We both shared the same therapy room.
Tonight we had dinner at Enzo's Pizza where a few of Mike's best friends came to eat and see us. Robby Gilbert got Mike Morgan and Chris Wesson to come and it was a great booster for Mike's spirit. They are great close friends and I love them all. It is hard to believe that they graduated from Tucker High nearly 20 years ago. Amazing.
Joe gets admitted to Emory Hospital for five days of chemo at 10:30AM Thursday. He will be getting HyperCVAD-R Part A, full strength. Joe is a real trooper and so brave with all the chemo though he lets me do the research and ask the questions.
Joe's Prayer Army is a mighty force and here you can claim part of the victory conquering this monster blood cancer. God has surely heard the prayers and has guided us though this dangerous journey. Right now, we are on a high note and I pray for the strength, wisdom and courage to handle the low times. You are helping us. Keep it going, dear Army!
Today is full of light and hope!
I am singing,"Praise God From Whom ALL Blessings Flow!" Have a great Thursday.
ReplyDeleteSusan
Happy celebrating - Bonnie's birthday, Joe's pathology report and Bonnie's arm feeling better! Yea,for good days!
ReplyDeleteAnnie Ruth
Great news!!! Pat B.
ReplyDeleteGood luck on finding a decent deli in Atlanta. Stage Deli was here for a couple of years and then left!! My mother and I do Goldberg's frequently but it's not New York. Tell Joe that I'm so proud of him, what a wonderful opportunity to share this journey with you and Joe. Nancy
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