6/23/11 Bonnie, where have you guys been?

Home, so sweet, Home! We got home on Sunday, June 12. It has taken this long for me to get the energy to write on the blog. The emotional roller coaster broke me down and I had to be rebuilt with new battery. Driving into our neighborhood with the large trees and homesites was emotional for the both of us. All we both wanted to do was nothing! Our desire was to be homebodies for as long as we needed. We unpacked the car and our luggage stayed unpacked for nearly a week. We valued watching TV in our home and on our couch. I had forgotten how great HDTV and a large screen was like. Heavenly, but after a week of do nothing, our batteries were recharged and started doing little things around the house and yard that needed doing.

Let me go back to that last jammed packed appointment week at MDACC. It took quite a toll on Joe. I had to intervene a few times as the bad guy to get things rolling or tell whoever that we were waiting too long and we would come back when we could. Joe had more eye exams, XRays, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with opthamologist, neurologists, radiologist, infectious disease, pulmingologist and lymphoma department. Appointment times were basically "suggestions" where the patient must show up at that time but God only knows how many hours it would take to be seen. The last day we started with neurology at 8:15AM and waited in the small windowless sterile exam room for two hours. We were already late for the next appointment. I walked out of the room looked all over the hallway and there was no one in sight. I walked out to the hallway to make a call to Patient Advocacy to tell them the waiting is ridiculous. They put me on HOLD what seemed forever......I looked through the little window opening when I saw the doctor walking quickly down the hall then poked into Joe's room. I had no smile when I walked in and Joe had no smile either. The doctor stated that the hospital has him running ragged and stretched too thin and he did not make enough money for all he had to do. I know. I could not believe he said that either. Stress gets to all of us. He stated that this would be short that Joe should stay on the Keppra for seizures and gave me a 90 day prescription script so I could order it via mail order. He tested Joe's various reflexes and we were gone in probably 5 minutes. Outrageous, isn't it?

Next stop was the crazy opthamologist at 10:30. Thankfully there were not many people in the waiting area so I thought this should be easy for us to make the next appointment with pulminology at 11AM. Joe got called back at 10:15 and at 11AM he was still back there. I had been told to stay in the waiting room. I called Joe on his cell phone, no answer! I text Joe on his cell phone, no response so I did what Bonnie would have to do. I barged into the exam area and there was Joe sitting in the hallway on a little chair. I said what the heck are you doing there. Waiting for the doc. How long will it be? The nurses heard my voice and said the doc would be with him in a few minutes and that he was next. Few minutes pass. Joe's color was awful and I could tell he was feeling really bad and that he was weak from the lack of food and liquids. I told the nurses that we could no longer wait since he was getting weak and we were already very late for the pulminologist appointment. The doctor comes out to see what the noise is all about. She was very condescending with Joe and asked him why he was so angry that she was going as fast as she could with each patient. I told her that we had waited for hours on Monday with her and we could not do that again today. Look at Joe, one can see he is getting weak. We are late for another appointment by an hour. The doc said that he could come back later that day but the nurse was going to have to dilate his eyes. Well, why we had to wait another 15 minutes for that to happen was nuts when we saw nurses running around looking for supplies and seemed disorganized. Eyes are now dilated and I take Joe to the pulminologist. The eye staff had called ahead and told them about Joe and that he was a bit miffed about the delays. A nurse saw Joe quickly and pronounced him OK though she was really startled when she saw that his eyes were dilated. We get out of there at about 11:15 and Joe has 20 minute window in which to eat to prep for the PET Exam. We ate in the cafeteria downstairs where we met Alan, Laura Caruthers and their son, Sammy, for lunch. Alan is getting ready for a Stem Cell Transplant and getting various tests and exams for it. He had had his spleen removed with complications about two months ago. He looked pretty good. We went back to the eye doctor again. We did not wait very long this time, When she came into the exam room. she says to Joe, Are you feeling any better? He says No but the eternal waiting is very stressful and trying to meet each appointment in a short period of time. After some more examination, she tells Joe that his type of eye defect is not caused by the medication he was taking, She wants him to have a CT scan of his head and orbital area before we left Houston. I told her that it had to be done by the next day since we were leaving to go back home to Atlanta. Would you believe, the appointment was scheduled for 5PM on a Friday?!!!

We headed over to Mays Clinic for the PET Scan and they took Joe back and I would not see him for several hours. The Meadors stopped by to say hello while I was waiting and we talked for an hour when Joe came out. Joe was starving so we all decided to go eat at the fabulous Cleburne's Cafeteria on Bisonnett Street not far from MDACC which has great homemade from scratch food with very generous portions. Randy Meador has had an auto and an allo stem cell transplant. He looks wonderful and has a fabulous attitude. Randy and Angela are such fun people to have dinner with once again.

Joe and I were both asleep by 10PM that night since we had to get early again for his last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr Oki for the final word on Thursday afternoon. I have forgotten all the places we had to go that day but we did not get to the Lymphoma Department until 4:30PM. There was only a few patients left in the waiting room but we finally saw Dr Oki since Dr Romaguera was out of town for several big medical conferences. It was a bit anticlimactic. It was Oki going over every test result with us where each stated NO LYMPHOMA. Joe was in complete remission and he needed to come back and be restaged in three months. When he opened the door, there was our dear Goley Richardson, Dr Romaguera's RN who is pictured on the top of the blog. I gave her a huge hug and then the tears of relief finally flowed down my cheeks into her hair. She gave Joe a hug also. I gave a hug to Dr Oki who finally gave us a big smile, He acknowledged that he knew that we really wanted to hear the news after all these months from Dr Romaguera. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's PICC/CVC line removed from his left arm. As we waited, I cried and Joe held me. I could feel his relief also and I was crying for the both of us. I could see the emotion in his eyes and body language. The tech was wonderful who took out the line. It was all real that this nightmare was over with and that we would be going home, really home and that the chemo was done and was successful. The PICC line is equal to a ball and chain so having it removed it like FREEDOM with an exclamation point!!!!!!! Yeah, free at last!

We slept very late on Friday and packed up the room so we would be able to leave on Saturday. We had lunch at the Brisket House. We headed over to the Mays CT Out Patient Clinic which the crazy opthamologist ordered and got there on time. Oh my, they took Joe back to the rooms at 5:3oPM. I was pacing the floor like crazy what seems like forever and met a daughter from Roswell, GA with her Mom who had cancer in her nose. I met another couple from South Texas. When the man got called back, I told him to check if another patient by the name of Joe was still alive. I think it was about 8:30PM when Joe finally came out. He said the CT can of the head was the hardest one that he had. With his persistent cough, he would have to press a button to stop the machine so he could cough. It was a very long ordeal and the noise of the machine and having to wear a helmet was a bit much. He was finally over all the testing and ready to get away from the Texas Medical Center.

Saturday we drove about 7.5 hours before we stopped for the night in Biloxi. We had dinner at a Country New Orleans Cajun Restaurant where the locals eat. Thankfully from YELP we ordered only one dinner and shared it and still had enough food left over for another meal for the both of us. The shrimp and oysters were so tender and tasty. It was nice to find a little local place to eat.

We got home on Sunday evening just as the Bennetts next door were coming home from Chad, their son's, wedding in Columbia. We had hoped to had been able to attend the big joyous event but the timing did not work out.

Since we have been home, I have been making better meal choices. The toll of the last 10 months had me gain nearly 40 pounds. I know that it is terrible but the stress of this time was very high and I had to keep Joe eating since he had lost 30 pounds. He was slim to begin with. This past week I started exercising in the morning for an hour at Bally's Fitness and walking for a half hour in our hilly neighborhood.

I am so proud of Joe's attitude where he accomplishes little tasks around the house. He is walking about a half mile a day and he will get stronger. His appetite is fair but he is eating but I doubt that it is enough for him to gain weight.

This pass Sunday it was wonderful being able to attend church service at Eastminster Presbyterian Church and see everyone who had prayed and followed Joe's journey. They cheered at his remission and will pray that his remission will last a long time.

Joe had a CBC today at Emory. His blood counts improved except his platelets dropped to 118 which is acceptable but below normal. His coloring looks good and he seems upbeat though he still gets tired quickly but at least he accepts it as a situation that will get better with time.

Joe still has Myelofibrosis per his last Bone Marrow Biopsy. It is graded as MF-2 per the European grading standards where MF-3 is the worse stage. Dr Verstovsek of the Leukemia Department wants to put Joe back on the INCYTE trial drug since Joe's Quality of Life was good with it. Joe will fly for an exam with Dr V in mid July at MDACC. Next week we will consult with Dr Winton of Winship Cancer Institute at Emory about the Myelofibrosis to get his opinion what Joe should do. Joe's sweats happen more often now and he has itching behind both ears which might be from the MF. I bought him some Benedryl to see if that relieves the itching since I read that it could help on the MPN Support Group on line. One can not take it long term cause of possible liver complications but I want to see if it helps him.

The medical community changed the name of MPD (the D is for Disorders) and MPN (the N is for Neoplasms) so the diseases can get more funding and research by designating it as a type of very slow leukemia. It sounds awful but if it helps find a cure then that would be a real gift to humanity.

I want to thank my blog and Facebook readers who donated to my niece, Jaclyn Garris, efforts to raise funds for the Leukemia and Lymphoma Society (LLS) by participating in the Nation's Triathlon to be held in Washington, DC on September 11. You can still donate and still help the cause. "Soon there will be a cure," as Mary states at the end of every Mantle Cell posting.

Faith. Hope and Charity! It is what keeps us going.

Blessings and thanks to all,