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Wednesday, January 4, 2012

TACE numero dos

      How do you like my TexMex Heading? On Thursday morning, I woke-up bright and early to get myself and Thomas ready for the day. I have and will always be an early riser. I packed an overnight bag and got everything in the car, except for this ginormous notebook that my cousin Karen gave me. It literally has my entire medical history inside. I take it everywhere, I get a copy of ALL of my medical records (as everyone should). I am an active participator in my care. These people caring for me just met me, they don't know me and I want to make sure everything is being done right. With that said, my coordinator had emailed me on Wednesday night at 5:33 (after business hours) to tell me that the radiology team for transplant services was going to review my scans and they may decide to cancel my TACE. I emailed back a strong (Paul would say rude) response. I had questions: if my tumors are growing and increasing in number, why wouldn't we do an intervention?, why had she waited so late to give me this information ( I felt a phone call would have been better, so I could have my questions answered, and I told her not to bother calling me if they cancelled the TACE, a doctor would need to call me so all my medical questions could be answered at that time because I had to wait SIX weeks last time to get my results and I would not stand for that again. You might be reading this thinking, she is rude, but I am not. This is a fight for my life, I am not dealing with a plastic surgeon's office because I am electing to have surgery. I don't want to be on this list, I don't want to have cancer, I don't want to have to make a coordinator work, but enough is enough. I have to advocate like this for my patients at work, so this is familiar territory for me. This is stressful and I want to feel like I am doing something to treat my tumors, I feel like they think it is a game, but if this is a game, they just met their most competitive player. My coordinator called a little after 7:00 Thursday morning and said that the radiology team agreed with my doctor's plan for a TACE. Thank you Jesus! That was an answered prayer, I had been a nervous wreck all night.
     Paul, Thomas, and I all rode in the truck, and my parents followed us. I can't explain it, but this illness has brought my family extremely close to Paul. It was nice watching them joke and talk so effortlessly and everyone gets a long well. I love my family. I was checked in and a nurse took me to a room where I had to change into a gown, have a pregnancy test done, labs drawn, IV placed, antibiotic given, and a long medical history obtained. After all of this was completed, Paul, Thomas, and my parents were called down to my room and we waited until they were ready for me in radiology. A little before noon, I was transported down and put into a slot to wait to sign consents and give another medical history to a new nurse in this dept. I was not assigned the nurse called Joy, but she made sure to take care of me. They had decided to use a larger dose of medicine on me this time, so the actual chemo was not ready. I heard Joy on the phone saying, "You said it would be ready in 30 minutes, it has been 30 minutes, I am coming to get it." She did go up and get it, which I already realize is her going above and beyond for me, she could have made me wait longer until the pharmacy brought the medicine down, but she was too caring for that. I signed consents, a different radiologist was going to do this procedure than last time, so we all asked our questions, I gave everyone a kiss, and then they wheeled me into the procedure room. With about 3 women in the room and 1 man in the room, the only man had to shave my private area. Are you kidding me? Could a woman do this? He was very nice and professional and it was over in a few seconds, but still really awkward. Next, they cleaned both sides where my femoral arteries are then draped me. Then, they numbed the area where the needle would be inserted. That hurt, but the weirdest thing is feeling the guide wire being pushed through my body, I can actually feel it, especially when they remove the wires. It seemed to take longer this time, I needed oxygen again, and I was really tense. That is, until Joy, my hero returned to the room to check on me and she asked the nurse in the room if she had "given" me anything because I looked really stressed. My nurse said no, and then Joy asked the doctor if she could give me some relaxing medication. She gave me some Versed in my IV and I actually felt my shoulders relax and lay on the table, my fists unclenched and my fingers were resting on the table, and my feet were no longer flexed in fear. I could have kissed Joy at that moment, but instead, I started crying. WHY you may wonder? I get extremely emotional when someone shows me genuine compassion and care. I have always been able to sense when someone is doing something out of the kindness of their heart, or for different reasons. Joy was just sharing her light. I couldn't wipe my tears because my arms were in these little restraint-like things, and now my vision was blurry, so I couldn't see my vital signs anymore, so I had to just relax and think of something happy. I thought of my son out in the waiting room making all those around him smile. He loves "old" people like his Daddy, and my mom said he put on a great show. Every time Thomas saw me on the stretcher moving around, he would belly laugh, he thought it was hilarious that I was on this bed. I love my little booger! After the procedure was over, I was wheeled back into a new slot to have this clamp placed on my hip area and then my family could come see me. Joy walked up to me and asked me about my other children because she had seen on my chart that I had had two c-sections! So, I told her about Benjamin and Jacob, I didn't cry, I held it in, but then she did something that made me sob like I haven't sobbed in a long time. Joy is a very petite Filipino woman and she crawled up to where her face was right next to mine and she hugged me and she cried. She cried people. She told me I had had to deal with enough, no more after this. She talked to me about Jesus and was so happy that I knew Him as my personal Saviour. I felt so blessed to have met her and I never would have met her if I did not have this diagnosis. I like having a silver lining. The absolute worst part of this procedure is that I have to lay flat for 6 to 8 hours after the procedure. So, I had to use a bed pan, which is the ultimate last resort for me. I asked Joy if my mom could do it for me and Joy let her. I was so happy and I talked my mom through it because I did not want any "spills" to occur. About 20 minutes later, they found I had a hematoma and they had to message it out and put manual pressure on it. After a few more minutes, I was ready to go to my room. My whole family escorted me and Thomas laughed the whole time again as I was wheeled on the stretcher.
     Paul stayed the night with me on a very uncomfortable chair and he got a lot of work done for the upcoming volleyball tournament. He even washed my hair, rubbed my feet, and snuggled with me. It was nice having him all to myself. He didn't even try to watch any football! I had a wonderful nursing assistant that came in my room with a smile and did not mind getting me anything I needed. I was so hungry and those were the best crackers I had ever eaten. We slept pretty good throughout the night, and I only threw-up once in the morning. I told my nurse to please call my doctor because I needed to be discharged home because today was my sister's 40th Birthday.  I didn't care how bad I felt, I was going to suck it up for my big sis, she is worth it. My doc came in a little after 9:00 and put in the discharge orders and by 10:00 I was on my way home. I went home to kiss and love all over Thomas, I will never opt to spend a night away from him, the two I have had to stay away from him have already been too hard. I cannot imagine leaving him for any other reason. I love him so much.

Next, I went to my sister's job and kidnapped her. I had already cleared this with her boss. We went to lunch at Jason's Deli, went to have pedicures done, and then I took her to get a real haircut at It's About Hair. We had a lovely time and my sister looked beautiful. I love spending time with her. She is such an amazing and strong woman with a heart truly bigger than Texas. She has helped too many people to count in her 40 years. She thought that was the only surprise for the day, but my Aunt Tricia, my cousin Karen, my mom, and I had planned a surprise dinner for her at Casa Ole that night and she was totally shocked. We had all pitched-in to buy her a laptop, printer, flash drive, and converter box. Her job ordered her four new handles for her car (great gift idea Evelyn), and many other gifts were brought. My sister was overwhelmed with joy and happiness. She was crying tears of joy and she was so grateful. I am so elated that we were able to surprise her and shower her with love. She is a rock and she has always been my real sister (not my half sister). I love her so much!

Okay, my fingers hurt and I need to get to bed soon, more to come later. Thanks for taking this journey with me and thank you for all of your support. You will never know how much your texts, comments, emails, facebook posts, phone calls, etc mean to me. Let's pray for a liver soon!


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