SAFELY ARRIVED AND EMORY UNIVERSITY HOSPITAL

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.

Ciao!