This week has really been full of ups and downs. From a trip to the ER Monday, to a doctors appointment everyday this week, there has been a lot going on. The steroid infusion I had a week ago yesterday did not provide any relief. When I went to my primary care doctor on Monday she said that she had never seen me look as bad as I did, and was concerned with the type of swelling that I was experiencing, and my high blood pressure, she wanted to make sure that my heart or kidneys weren't in trouble. She performed an EKG which showed I wasn't in heart failure (such a blessing from the Lord). She wanted to see if 48 hours on a diuretic would help get some of the fluid off, and if not then she would have to admit me to the hospital. We were waiting for some kidney function tests before I could start the medication, but there was some mix-up, so the results didn't get to the doctor until the next day. Later Monday evening my blood pressure had risen and I was experiencing a bit of a headache, so my mom decided to take me to the ER, not wanting to mess around, particularly because of my blood clot. The doctor performed another EKG, a chest CT & x-ray, as well as heart, kidney, and liver function. Thank goodness that everything came back good. My primary said that she could possibly hear a little fluid around my lungs, but the doctor said it could have been such a small amount, that it wasn't picked up on the CT or x-ray. They gave me some IV diuretics, and said that I should notice a different when I woke up in the morning, and to call my primary back and give her an update. Unfortunately the swelling did not go down, and was actually a bit worse. The nurse at my doctor's nurse told me that she wasn't there, but that I needed to be seen by one of her colleagues. Her colleague was very nice, a great backup for when my primary isn't available. She said that this was probably a progression of my disease, and put me on a steroid taper, as well as to continue the diuretics, and to let Dr. Carrasco's office know what was going on. I wasn't that thrilled about taking more steroids, but anything to help. Dr. Carrasco's office contacted him while at his conference, and if possible, he wants to see me before my scheduled March 6th appointment. The steroids haven't helped a lot, but I'm hoping once I finish the taper I will have some relief. My weekly blood work jumped a few points from previous tests, but we shall see what next weeks blood work shows.
I have been feeling so many different emotions this week, and of course being on the steroids makes it difficult to know how much of it is because of them. I have been really relying on the Lord for strength and guidance this past week. Part of me wants to stop this Cell-Cept and switch to something else. To what, I have no idea. I knew I would experience more symptoms, but not this bad this quickly. I have been praying that the Lord will help me with this mix of emotions I have been feeling. I find that I get frustrated easily, and get short and snippy with my family, and they don't deserve to be treated that way. They have been doing a good job of trying to be as patient with me as possible, thinking the steroids are a big part of it. I don't want to use the steroids as an excuse for acting out what I'm feeling, even though they are known to cause mood changes. I know that God is the one thing that can truly bring me comfort and peace with all that I'm feeling. I love what Romans 5:1-2 says, "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God." This scripture verse is very comforting to me, because it helps me to know that by having faith, I have peace with God through Christ. My faith in God has been the one solid thing throughout this journey, and it continues to be. Whenever I am feeling whatever it is I am feeling, relying on my faith always grounds me. And that gives me the strength and peace that I need to continue on this roller coaster, no matter how many ups and downs, and loops there may be.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, February 22, 2014
Saturday, February 15, 2014
Valentines Day Surprise
Yesterday was Valentines Day, a day in which we celebrate love. Most people equate the day with showing that special someone (spouse, boyfriend or girlfriend) in their life how much they love and care for them. For those of us who are not married or in a relationship, it is a day in which we share with our loved ones how much they mean to us. For me, it is also a day when I remember the unconditional love that God has for me. He showed me how much He loved and cared for me, by giving up His one and only son to suffer and die on the cross, bearing my sins, so that I can have eternal life with Him in heaven. When I think about God's love, it makes me want to share that love with my friends and family, not just on Valentines Day, but all the other 364 days of the year.
My Valentines Day was not one that most would consider a good day, but in reflecting back on it, the amount of love that I have in my life was clearly evident. The day started out as a typical Friday morning, with me getting ready to go up and have my weekly blood counts drawn at the Texas Oncology on Balcones. I had been feeling terrible, and was horribly fatigued, weak, and stiff and swollen. It was clearly evident that I was in a flare. When I got to the infusion area to have my port accessed, my blood pressure was really high at 159/11 with my heart rate being 125. We thought this was because of how much discomfort I was in. My mom had spoken to Dr. Carrasco's office the day before, and he was gone all next week, and I couldn't get into see my primary until Monday. They said if I was having more symptoms to go to the hospital for a steroid treatment. After seeing my blood pressure, and telling the nurse what Dr. Carrasco's office had said, we called my Hem/Onc doctor, Dr. Cline-Burkhardt at Texas Oncology Seton Williamson, to see if she could fax in orders for me to have a steroid treatment at Balcones, since I was already accessed for my blood draw, and so I wouldn't have to go to the hospital. She wanted to make sure I didn't have any signs of an infection, as giving steroids to a person who has an infection can be extremely dangerous. Once she was confident I didn't, she faxed in the order for me to have 1000mg of IV Solumedrol (steroids). The last time I had IV steroids (this kind being different than the Dexamethasone I got with chemo to combat nausea), was two years ago when I was in the hospital with my blood clot right before starting Cytoxan. I have had so much steroids, as well as having dealt with the terrible side effects (weight gain, Avascular Necrosis, Cushings, and other things) that the doctors are extremely hesitant to give me steroids. So the fact that I received a treatment, means that I was really bad. My grandmother stayed with me for what was supposed to be a half hour to 45 minute visit to a two and a half almost three hour visit. My mom was calling regularly, and asking me if I wanted her to leave work and come be with me, but I said that Susu was taking good care of me. Less than halfway through the infusion I was already starting to taste the metallic taste, and feel ravenously hungry, like I could eat a horse. This is not a hunger that can simply be controlled by willpower, and doctors can tell you that. When we left there at noon (arriving at 9:15) we went to grab a bagel at Einstein's, unfortunately the hazelnut coffee that I absolutely love tasted funny because of the metallic taste from the steroids. When we got home I took some Benadryl, and curled up in the big bed with my grandmother and crashed. When my mom got home she was worried about my blood pressure, and was debating as whether or not to take me to the ER. I started getting real snippy and yelling at everyone, and being very unpleasant. Everyone knew that this was "roid rage", as we had been through this before when I was on steroids, but knowing that doesn't make it any easier to deal with. Before we left, my grandfather surprised us with two boxes of Lambs Candies chocolate covered strawberries. Such a wonderful treat from a wonderful man. My mom then went and picked up our dinner from Brick Oven, we came home and relaxed, and then I started to feel that headache common with steroid infusions, and by 9:30/10:00 o'clock I was out.
Although this was not the Valentines Day my family and I had in mind, I was reminded and shown how much I am loved. The way my family went into action mode, calling the doctors, checking on me frequently, grandmother sitting with me through the infusion, all of them being super diligent about my blood pressure, made me see that I have so much love and support around me everyday. Its in scary and difficult times like these, when how much love you have for a person is displayed.
Its easy to say "I love you" to someone, or buy them flowers, a card, or a box of chocolates. But if your not there when they truly need you such as when they are sick, or during some other crisis, it doesn't mean anything. As the saying goes, "actions speak louder than words." John 13:35 says, "By this shall all men know that ye are my disciples, if ye have love one to another." I love this scripture verse, because it reminds me that the love my family has for me, displays the love that God has for me. This is true, because as the verse says, I know that God loves me, in the way that my family displays there love for me. This may have been a different kind of Valentines Day, but there was definitely not a lack of love, and the amount of love shown makes it a good Valentines Day in my book.
P.S. I hope everyone had a Happy Valentines Day, filled with a lot of love and blessings. Even if you don't have a "special someone" in your life, it doesn't mean that you are not loved. You are loved by God, more than you will ever know. His is a love that is unending, and unconditional. That, is true love.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
My Valentines Day was not one that most would consider a good day, but in reflecting back on it, the amount of love that I have in my life was clearly evident. The day started out as a typical Friday morning, with me getting ready to go up and have my weekly blood counts drawn at the Texas Oncology on Balcones. I had been feeling terrible, and was horribly fatigued, weak, and stiff and swollen. It was clearly evident that I was in a flare. When I got to the infusion area to have my port accessed, my blood pressure was really high at 159/11 with my heart rate being 125. We thought this was because of how much discomfort I was in. My mom had spoken to Dr. Carrasco's office the day before, and he was gone all next week, and I couldn't get into see my primary until Monday. They said if I was having more symptoms to go to the hospital for a steroid treatment. After seeing my blood pressure, and telling the nurse what Dr. Carrasco's office had said, we called my Hem/Onc doctor, Dr. Cline-Burkhardt at Texas Oncology Seton Williamson, to see if she could fax in orders for me to have a steroid treatment at Balcones, since I was already accessed for my blood draw, and so I wouldn't have to go to the hospital. She wanted to make sure I didn't have any signs of an infection, as giving steroids to a person who has an infection can be extremely dangerous. Once she was confident I didn't, she faxed in the order for me to have 1000mg of IV Solumedrol (steroids). The last time I had IV steroids (this kind being different than the Dexamethasone I got with chemo to combat nausea), was two years ago when I was in the hospital with my blood clot right before starting Cytoxan. I have had so much steroids, as well as having dealt with the terrible side effects (weight gain, Avascular Necrosis, Cushings, and other things) that the doctors are extremely hesitant to give me steroids. So the fact that I received a treatment, means that I was really bad. My grandmother stayed with me for what was supposed to be a half hour to 45 minute visit to a two and a half almost three hour visit. My mom was calling regularly, and asking me if I wanted her to leave work and come be with me, but I said that Susu was taking good care of me. Less than halfway through the infusion I was already starting to taste the metallic taste, and feel ravenously hungry, like I could eat a horse. This is not a hunger that can simply be controlled by willpower, and doctors can tell you that. When we left there at noon (arriving at 9:15) we went to grab a bagel at Einstein's, unfortunately the hazelnut coffee that I absolutely love tasted funny because of the metallic taste from the steroids. When we got home I took some Benadryl, and curled up in the big bed with my grandmother and crashed. When my mom got home she was worried about my blood pressure, and was debating as whether or not to take me to the ER. I started getting real snippy and yelling at everyone, and being very unpleasant. Everyone knew that this was "roid rage", as we had been through this before when I was on steroids, but knowing that doesn't make it any easier to deal with. Before we left, my grandfather surprised us with two boxes of Lambs Candies chocolate covered strawberries. Such a wonderful treat from a wonderful man. My mom then went and picked up our dinner from Brick Oven, we came home and relaxed, and then I started to feel that headache common with steroid infusions, and by 9:30/10:00 o'clock I was out.
Although this was not the Valentines Day my family and I had in mind, I was reminded and shown how much I am loved. The way my family went into action mode, calling the doctors, checking on me frequently, grandmother sitting with me through the infusion, all of them being super diligent about my blood pressure, made me see that I have so much love and support around me everyday. Its in scary and difficult times like these, when how much love you have for a person is displayed.
Its easy to say "I love you" to someone, or buy them flowers, a card, or a box of chocolates. But if your not there when they truly need you such as when they are sick, or during some other crisis, it doesn't mean anything. As the saying goes, "actions speak louder than words." John 13:35 says, "By this shall all men know that ye are my disciples, if ye have love one to another." I love this scripture verse, because it reminds me that the love my family has for me, displays the love that God has for me. This is true, because as the verse says, I know that God loves me, in the way that my family displays there love for me. This may have been a different kind of Valentines Day, but there was definitely not a lack of love, and the amount of love shown makes it a good Valentines Day in my book.
P.S. I hope everyone had a Happy Valentines Day, filled with a lot of love and blessings. Even if you don't have a "special someone" in your life, it doesn't mean that you are not loved. You are loved by God, more than you will ever know. His is a love that is unending, and unconditional. That, is true love.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Thursday, February 6, 2014
Turning 21
Sorry this post is a bit late, but I'm just now getting around to writing it.
A week ago this past Tuesday was my 21st birthday, which itself is a milestone, but for me each birthday really is a milestone and a gift. My birthday day itself was nice, although it was an ice day and the schools were closed, which really doesn't have an impact on me, but I was able to spend more time with my mom that day since she couldn't go to work which was nice. On my actual birthday I wanted to have a small family dinner at home with my mom and grandparents, and do my "party" over the weekend when everything is more relaxed. My grandmother cooked me my favorite dinner of beef stroganoff, and we had an Italian cream cake for dessert. My grandmother gave me two beautiful new James Avery charms to start a new necklace, and I got some beautiful pink (my favorite color) roses from my mom, and sweet cards from everyone. It was a very nice dinner. Later that evening when my grandmother and I went to our Tuesday night Bible study I was surprised with a little celebration of chocolate cake, sweet cards from everyone, and two small precious trinkets from two of the members. It was such a wonderful surprise, and made me feel so loved and blessed to have that group in my life.
The weekend was also a continuation of celebrating my birthday. On Friday my mom took me to my favorite Italian restaurant Reales for a mother-daughter dinner, for just the two of us. On Saturday we went to lunch at La Madeleine and then went and got manicures and pedicures together that afternoon. Afterwards we went to the movies and saw Dallas Buyers Club, which wasn't as depressing as I thought it would be. Even though I don't have HIV/AIDS I was able to relate to some of the storyline. Saturday was very busy, and I was exhausted by the time I got home, but it was definitely worth it. Sunday was my "official" birthday celebration. My mom, grandparents, great great aunt, and cousin went to brunch at my favorite restaurant Fonda San Miguel. They have a famous Sunday brunch, and they serve authentic interior Mexican food. All their food is delicious, but my favorite is their corn pudding. My grandmother got the cookbook, so now she can make it at home. Apparently its not that difficult to make. My great great aunt and cousin gave me another beautiful James Avery charm to go on my new necklace, as well as another angel charm, as well as a sweet, heartfelt card. Being 21 I got to legally order an alcoholic beverage, I chose a real Pina Colada, and the waitress carded me. When we were at Reales on Friday, the waitress carded me when I ordered a riesling to go with my dinner. The brunch was fabulous, and we were all stuffed when we left, I was a little bit wonky after the Pina Colada, even though I only had one. I guess its because of all the medicine I'm on. It was so cold on Sunday, that after brunch my mom and I went back to her house, cuddled up and took a nap while watching a Law & Order SVU marathon. That evening I went to the youth group Super Bowl party up at my church, which was fun. My birthday and birthday weekend to celebrate turning 21 were wonderful. I celebrated the way that I wanted to, with the people who I love, and who support and encourage me the most. It was a memorable and fun 21st birthday
Turning 21 is such a milestone for me because the Lord has blessed me with another year. Having a doctor tell me that statistically its amazing that I have lift past five years, makes each year that much more special. 2 Corinthians 9:15 says, "Thanks be unto God for His unspeakable gift." I love this scripture verse because the gifts of life, another year, and family and friends are truly unspeakable, and gifts that I cannot thank God enough for. Although my life right now at 21 is very different then what I thought it would be, it is still a gift and a blessing. I know that this year will be filled with even more of God's gifts and blessings for which I need to remember to be thankful, and thank Him for.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, January 18, 2014
Make-A-Wish Trip
Note: Unfortunately, I am not allowed to post the pictures I took with the NCIS cast on my blog, or any form of social media. The actors are very careful, and want their privacy (which is understandable when your televisions number one show). If I see you in person, I will try to show you the pictures.
Our trip to LA was absolutely WONDERFUL. We left early Tuesday, and came back late last night. Our flight left 8:00 AM on Tuesday, made a stop in Denver (luckily we didn't have to change planes), and arrived at LAX around 12:30 PM California time. We had a handicapped accessible van waiting for us, and then drove to the Sheraton at Universal Studios. Of course with LA traffic, it took a while to get to the hotel. We got settled, had a late lunch/appetizers, and rested a bit. We went to a delicious local little Italian restaurant call Firenze. The food was fantastic, and we all had the sea bass in some form. Seeing that we were with MAW, the restaurant comped our desserts (which were decadent), and gave us the cookbook of their chef Fabio, who was featured on Bravo's Top Chef. He wasn't there that night, and they didn't have anymore signed copies, but getting the book was wonderful in itself. We gave it Susu since she loves Italian food and cooking. When we got back to the hotel stuffed, around nine, I had a message from MAW saying that Southwest had one of my bags, which we didn't realize. We called Southwest's baggage department at LAX, but no one answered. So my best friend Cory, who came on the trip with us, went with my grandfather to LAX to pick up my suitcase, and give back the one we accidentally took. Now if anyone has lived or visited LA, you know how confusing the highway system can be. They had to make a loop around the city, and apparently it was an adventure with them returning the hotel at around 11:45/midnight. They are truly wonderful for doing that, and it was all good because I got my suitcase.
The next day, we spent the morning relaxing, and then had lunch at the hotel. At around one o'clock, a MAW person met us and picked us up in a handicap accessible limo where we drove to the NCIS studio. On the way we toured Universal City, saw where the Disney studio is, where Atlantic Records is located, and Bob Hope's house. When we arrived at NCIS, the cast was having lunch. We were greeted by Mark Harmon (Gibbs), Michael Weatherly (DiNozzo), and Brian Dietzen (Palmer). They were so wonderful, and down to earth. I even got a shoulder rub from Michael Weatherly. Mark has a very commanding presence, and Weatherly is very much like DiNozzo. We took a tour of the set, which was great. We saw the MTAC room, Gibbs house and basement, Abby's lab, autopsy, and the main NCIS room, as well as interrogation. We also got to see the where the outside of Gibb's barbershop, and the pet store Abby's brother works at, is filmed. We then got to see them film a scene. Which can take a long time, due to different camera angles, and making sure everything is perfect. This is when I got to see Sean Murray (Maggee), Emily Wickersham (Bishop), and David McCallum (Ducky). I also got to hold Bert the hippo (Abby's stuffed animal). Pauley Pirette (Abby), and Rocky Carroll (weren't there), but they signed the group picture. We were there for 3 1/2 hours and when we left Mark Harmon told me to come back, and he said it more than once (I think he was serious). They were sad we had to leave. I got a big long hug from both Michael and Mark. I got a challenger coin from Michael, an NCIS season 11 hat and shirt, signed photographs, and a hat an pin from a real NCIS person who is a technical advisor on the show. Our MAW guide (who has been on several NCIS wishes), and the production assistant both said that they had never seen the cast spent that much time with a wish kid, and be so open about pictures, which they offered to take with me. After we left meeting with NCIS, we drove to Santa Monica, and had a delicious seafood meal at a restaurant right on the ocean across from the meal. I had crab, that was excellent. Afterwards we went to the pier, and although all the rides were closes, it was still so wonderful being near the ocean, smelling the ocean air, and feeling the breeze. The lights on the Ferris wheel were so colorful, it was beautiful. We then headed back to the hotel, where I fell asleep in the car because I was so wiped out. Driving back to the hotel on the freeways of LA, was again an adventure. We had such an amazing and memorable day that was great fun.
The next day we went to the Universal Studios theme park, which MAW had tickets and front of the line passes waiting for us. I went on The Mummy, Transformers, Jurrasic Park, and Simpsons rides. I thought I might never get to go to another theme park and ride rides again, so it was a real treat to be able to do that. My mom was of course worried about my neck on the rides, but I wanted to just enjoy myself. I was sore later that night and the next day, but it was worth it. The last thing we did at the park was go to a Water World show (based on the Kevin Costner movie) that was spectacular, and had wonderful special effects. We were exhausted by the afternoon, and headed back to the hotel to rest before dinner. We had reservations for dinner that night at the Wolfgang Puck Universal City Walk restaurant, which compt our meal. It was delicious, and was nice because it was casual so we didn't have to dress fancy. We then headed back to the hotel because we were exhausted after spending the day at the park. The next day we left around 10:30 and headed to the airport. Even though our flight left at 2:50, we needed to leave room for LA traffic, checking the bags, security, and just dealing with electric wheelchair and everything else. With it being a Friday, it was more crowded. We checked in and got through security without a hitch, had lunch, and had plenty of time until our flight. We left on time, although the plane was completely full because they overbooked, and flew to Phoenix, where we changed planes. We were a bit concerned, because by the time we got off the plane in Phoenix, we only had 15 minutes to change planes, and they had to bring me a wheelchair. Luckily our gate was only three gates away, and a flight attendant was there with a wheelchair and took us to the gate. We didn't have the hour and a half layover we thought we would in Phoenix, which was great. We got to Austin at 9:15 last night, sent my grandfather to get our car from the Parking Spot, while mom, Cory, and I went to baggage claim. It was 9:45/10:00 by the time we were in the car on the way home. We were starving, because we hadn't eaten since one that afternoon, so we went through the Whataburger drive through. We ate quickly at home, and Cory and mom left, I unpacked (because I just wanted to get it done and over with), and it was midnight by the time I went to bed.
The trip was phenomenal, and was better than any of us imagined. It came at a perfect time, with the news from my last appointment, and finishing two years of chemo a week from yesterday. I can't thank the MAW foundation, NCIS, Universal Studios, and countless others for making this trip happen. It was such a blessing, and I am so grateful. 1 Thessalonians 1:2 says, "We give thanks to God always for you all, making mention of you in our prayers;..." This verse sums up how I feel about everyone who made this trip possible. It was an experience that I will never forget, and it has truly been the highest point of my roller coaster journey.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Our trip to LA was absolutely WONDERFUL. We left early Tuesday, and came back late last night. Our flight left 8:00 AM on Tuesday, made a stop in Denver (luckily we didn't have to change planes), and arrived at LAX around 12:30 PM California time. We had a handicapped accessible van waiting for us, and then drove to the Sheraton at Universal Studios. Of course with LA traffic, it took a while to get to the hotel. We got settled, had a late lunch/appetizers, and rested a bit. We went to a delicious local little Italian restaurant call Firenze. The food was fantastic, and we all had the sea bass in some form. Seeing that we were with MAW, the restaurant comped our desserts (which were decadent), and gave us the cookbook of their chef Fabio, who was featured on Bravo's Top Chef. He wasn't there that night, and they didn't have anymore signed copies, but getting the book was wonderful in itself. We gave it Susu since she loves Italian food and cooking. When we got back to the hotel stuffed, around nine, I had a message from MAW saying that Southwest had one of my bags, which we didn't realize. We called Southwest's baggage department at LAX, but no one answered. So my best friend Cory, who came on the trip with us, went with my grandfather to LAX to pick up my suitcase, and give back the one we accidentally took. Now if anyone has lived or visited LA, you know how confusing the highway system can be. They had to make a loop around the city, and apparently it was an adventure with them returning the hotel at around 11:45/midnight. They are truly wonderful for doing that, and it was all good because I got my suitcase.
The next day, we spent the morning relaxing, and then had lunch at the hotel. At around one o'clock, a MAW person met us and picked us up in a handicap accessible limo where we drove to the NCIS studio. On the way we toured Universal City, saw where the Disney studio is, where Atlantic Records is located, and Bob Hope's house. When we arrived at NCIS, the cast was having lunch. We were greeted by Mark Harmon (Gibbs), Michael Weatherly (DiNozzo), and Brian Dietzen (Palmer). They were so wonderful, and down to earth. I even got a shoulder rub from Michael Weatherly. Mark has a very commanding presence, and Weatherly is very much like DiNozzo. We took a tour of the set, which was great. We saw the MTAC room, Gibbs house and basement, Abby's lab, autopsy, and the main NCIS room, as well as interrogation. We also got to see the where the outside of Gibb's barbershop, and the pet store Abby's brother works at, is filmed. We then got to see them film a scene. Which can take a long time, due to different camera angles, and making sure everything is perfect. This is when I got to see Sean Murray (Maggee), Emily Wickersham (Bishop), and David McCallum (Ducky). I also got to hold Bert the hippo (Abby's stuffed animal). Pauley Pirette (Abby), and Rocky Carroll (weren't there), but they signed the group picture. We were there for 3 1/2 hours and when we left Mark Harmon told me to come back, and he said it more than once (I think he was serious). They were sad we had to leave. I got a big long hug from both Michael and Mark. I got a challenger coin from Michael, an NCIS season 11 hat and shirt, signed photographs, and a hat an pin from a real NCIS person who is a technical advisor on the show. Our MAW guide (who has been on several NCIS wishes), and the production assistant both said that they had never seen the cast spent that much time with a wish kid, and be so open about pictures, which they offered to take with me. After we left meeting with NCIS, we drove to Santa Monica, and had a delicious seafood meal at a restaurant right on the ocean across from the meal. I had crab, that was excellent. Afterwards we went to the pier, and although all the rides were closes, it was still so wonderful being near the ocean, smelling the ocean air, and feeling the breeze. The lights on the Ferris wheel were so colorful, it was beautiful. We then headed back to the hotel, where I fell asleep in the car because I was so wiped out. Driving back to the hotel on the freeways of LA, was again an adventure. We had such an amazing and memorable day that was great fun.
The next day we went to the Universal Studios theme park, which MAW had tickets and front of the line passes waiting for us. I went on The Mummy, Transformers, Jurrasic Park, and Simpsons rides. I thought I might never get to go to another theme park and ride rides again, so it was a real treat to be able to do that. My mom was of course worried about my neck on the rides, but I wanted to just enjoy myself. I was sore later that night and the next day, but it was worth it. The last thing we did at the park was go to a Water World show (based on the Kevin Costner movie) that was spectacular, and had wonderful special effects. We were exhausted by the afternoon, and headed back to the hotel to rest before dinner. We had reservations for dinner that night at the Wolfgang Puck Universal City Walk restaurant, which compt our meal. It was delicious, and was nice because it was casual so we didn't have to dress fancy. We then headed back to the hotel because we were exhausted after spending the day at the park. The next day we left around 10:30 and headed to the airport. Even though our flight left at 2:50, we needed to leave room for LA traffic, checking the bags, security, and just dealing with electric wheelchair and everything else. With it being a Friday, it was more crowded. We checked in and got through security without a hitch, had lunch, and had plenty of time until our flight. We left on time, although the plane was completely full because they overbooked, and flew to Phoenix, where we changed planes. We were a bit concerned, because by the time we got off the plane in Phoenix, we only had 15 minutes to change planes, and they had to bring me a wheelchair. Luckily our gate was only three gates away, and a flight attendant was there with a wheelchair and took us to the gate. We didn't have the hour and a half layover we thought we would in Phoenix, which was great. We got to Austin at 9:15 last night, sent my grandfather to get our car from the Parking Spot, while mom, Cory, and I went to baggage claim. It was 9:45/10:00 by the time we were in the car on the way home. We were starving, because we hadn't eaten since one that afternoon, so we went through the Whataburger drive through. We ate quickly at home, and Cory and mom left, I unpacked (because I just wanted to get it done and over with), and it was midnight by the time I went to bed.
The trip was phenomenal, and was better than any of us imagined. It came at a perfect time, with the news from my last appointment, and finishing two years of chemo a week from yesterday. I can't thank the MAW foundation, NCIS, Universal Studios, and countless others for making this trip happen. It was such a blessing, and I am so grateful. 1 Thessalonians 1:2 says, "We give thanks to God always for you all, making mention of you in our prayers;..." This verse sums up how I feel about everyone who made this trip possible. It was an experience that I will never forget, and it has truly been the highest point of my roller coaster journey.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, January 11, 2014
Ups & Downs
This week has definitely been full of ups and downs. Those of you who saw my Facebook post on Tuesday, asking for prayers due to my appointment with my rheumatologist on Tuesday as being one of the most difficult, will get some answers with this post. My rheumatologist has made the decision to stop my weekly Methotrexate chemo, as it is losing its efficacy, and its major side effects such as liver problems and cancer. I had my last treatment yesterday, and wiull be sdtarting a new daily chemo next week called Cell-Cept, which is an immunosuppressant that was originally used as an anti-rejection medication in people with kidney and liver transplants. This medication will keep me from "falling off the cliff" as the doctors say, and as an alternative to the Methotrexate. If I don't tolerate it as orally, they an give it intravenously or by injection, but I'm not anticipoating any problems. It doesn't have the side-effects of nausea, vomiting, and hair-loss as Methotrexate, so my hair shoukd start growing back, which I'm looking forward to. Yesterday's final treatment was bittersweet, because after going there weekly for two years, you develop relationships with the staff and patients. The nurses said Friday's will sure be different without me and my grandmother there, and I got a certificate signed by the doctor and all the staff, saying I completed chemo. I will still get weekly bloodwork as the dcotrs are monitoring me closely for signs of a blood cancer such as Leukemia and Lymphoma. The doctor said on Tuesday that with all the medicines and chemo I have been taking, I am at an extremely high risk for cancer, which is why they are doing the weekly bloodwork. I have always known of this risk, but Tuesday was the first time they moved me into a higher risk category, which was hard to hear. My family and I are adjusting to all this news, and are just trying to stay positive.
Tuesday ended on a good note, when the Make-A-Wiah Foundation called conftirming that this coming Wednesday I will get to meet the cast of the hit CBS show NCIS. i am going with my mom, grandfather, and best friend since second grade, Cory. Our flight leaves 8:00 AM Tuesday, meet the cast and tour the set Wednesday, have a free day touring LA on Tuesday, and comeback on Friday. Iwill definitely take pictures, and post them on Facebook, and do a post about the trip when I get back. This trip is coming at a great time, with Tuesday's appointment being so hard.
So as you can imagine this week was filled with highs and lows. The one thing, besides my family and friends, that has helped me with all the emotions I have been feeling, is the Lord. I am trying to trust God, and be at peace with whatever happens. Proverbs 3:5-6 says, "Trust in the Lord with all thine heart; and lean not on your own understanding. In all thy ways acknowledge Him, and he shall direct thy paths." I love this verse, and read it everyday. It helps me to remind myself to trust God, because he is the one leads the way. Knowing that I am following God helps me to be at peace, because with Him leading the way, I will never be lost. Thank you all for your continued prayers, support, and encouragemnt. They mean a lot to me and my family.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Tuesday ended on a good note, when the Make-A-Wiah Foundation called conftirming that this coming Wednesday I will get to meet the cast of the hit CBS show NCIS. i am going with my mom, grandfather, and best friend since second grade, Cory. Our flight leaves 8:00 AM Tuesday, meet the cast and tour the set Wednesday, have a free day touring LA on Tuesday, and comeback on Friday. Iwill definitely take pictures, and post them on Facebook, and do a post about the trip when I get back. This trip is coming at a great time, with Tuesday's appointment being so hard.
So as you can imagine this week was filled with highs and lows. The one thing, besides my family and friends, that has helped me with all the emotions I have been feeling, is the Lord. I am trying to trust God, and be at peace with whatever happens. Proverbs 3:5-6 says, "Trust in the Lord with all thine heart; and lean not on your own understanding. In all thy ways acknowledge Him, and he shall direct thy paths." I love this verse, and read it everyday. It helps me to remind myself to trust God, because he is the one leads the way. Knowing that I am following God helps me to be at peace, because with Him leading the way, I will never be lost. Thank you all for your continued prayers, support, and encouragemnt. They mean a lot to me and my family.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Wednesday, January 1, 2014
HAPPY NEW YEAR
Another year has arrived, and I am so thankful that I survived and made it through another year. This is the time when we make resolutions for the year, such as being healthier, going to church and reading the Bible more often, being more kind, doing more volunteer work, and many others. Some of them we keep and are successful at, and others we stop or get sidetracked from within just a few weeks or months. I have done the same thing, and it can be challenging when we don't end up following through on them. I think that is why this year I am not making any specific resolutions, but instead living my life in a way that honors and serves God. I thought to myself, that by living in a way that honors God, I am accomplishing some of my resolutions. Loving others, being kind, having a joyful heart and attitude, helping those in needs, and others, are all principles found in scripture.
A new year symbolizes refreshment and rejuvenation, and this is the time that I like to refresh and renew my relationship with Christ. This gives me the opportunity to look at scripture, my faith, and God in a new and fresh way. This renewal of my relationship with God, and my faith, allows me to be able to turn to and trust Him even more. I am able to handle whatever is thrown at me, knowing that the Lord is with me, and helping me through the twists and turns. I know that this year my family and I will continue to see God's blessings and provision. Psalm 51:10 says, "Create in me a clean heart, O God; and renew a right spirit within me." Ephesians 4:23 says, "And be renewed in the spirit of your mind." I love these two scripture verses because I think they are perfect for a new year. They remind us to be renewed in our spirit, and our mind, which I think is what a lot of us strive for each new year. I don't know what this year will bring (although its starting of rocky with me battling a sinus infection), but I know that I am approaching it with a renewed heart, spirit, and mind, and with the Lord by my side. I hope that this year brings each and everyone of you many blessings. HAPPY NEW YEAR everyone!!!!
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
A new year symbolizes refreshment and rejuvenation, and this is the time that I like to refresh and renew my relationship with Christ. This gives me the opportunity to look at scripture, my faith, and God in a new and fresh way. This renewal of my relationship with God, and my faith, allows me to be able to turn to and trust Him even more. I am able to handle whatever is thrown at me, knowing that the Lord is with me, and helping me through the twists and turns. I know that this year my family and I will continue to see God's blessings and provision. Psalm 51:10 says, "Create in me a clean heart, O God; and renew a right spirit within me." Ephesians 4:23 says, "And be renewed in the spirit of your mind." I love these two scripture verses because I think they are perfect for a new year. They remind us to be renewed in our spirit, and our mind, which I think is what a lot of us strive for each new year. I don't know what this year will bring (although its starting of rocky with me battling a sinus infection), but I know that I am approaching it with a renewed heart, spirit, and mind, and with the Lord by my side. I hope that this year brings each and everyone of you many blessings. HAPPY NEW YEAR everyone!!!!
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Wednesday, December 25, 2013
Merry Christmas
Today we celebrate the birth of Jesus Christ, the perfect and most precious gift that we have and will ever received. I love Christmas, it is my favorite holiday filled with family and tradition. I try to remember that today is about celebrating Christ's birth, not about presents (which are fun the receive and open). Yesterday on Christmas Eve we did are usual Christmas Eve traditions. My mom, grandparents, great great aunt and I went to the pick-up pageant at my church, which we have gone to every year since I can remember. I played Mary in the pageant when I was in 4th grade, which seems like ages ago. After church we went out for our traditional Christmas Eve Chinese food dinner. Afterwards mom and I dropped Auntie-Em off at home and drove around her neighborhood to look at some of the beautiful Christmas life, which my mom and I have an affinity for. We then went home and relaxed watching Ms. Congeniality on TV while I enjoyed a glass of egg nogg. I went to bed early and read the Christmas story told in the book of Luke and finished reading a coffee table book recommended by the Billy Graham Evangelical Association called Grandmas Christmas Legacy:The Testimony Of The Tree. It is a wonderful book that is both a children's book, as well as for adults (although it looks like a Children's book). The book compares the meaning and symbol of parts of the Christmas tree to the fruits of the spirit. I highly recommend it, and its a great book to read as a family. As of this writing, Christmas morning has been slow and lazy here at my mom's house. We had some Trader Joe's chocolate croissants and opened our stockings, a tradition that my mom and I do together. I got some wonderful make-up and gift cards to Sephora and Starbucks. My mom and I may go to a movie today, and this afternoon we will go to my great great Aunt Martha's house to open presents and have Christmas dinner with the family.
Christmas is truly a celebration and as I said in my previous post the biggest birthday, where we are the ones who receive the perfect gift. I have been telling myself that I am going to focus on the birth of Jesus, and I will do my best to remember what were celebrating when our family is opening gifts. With the roller coaster my family and I have been on, Christmas (and all holidays), family, and tradition have become so important to me. I cherish the tradition and memories of Christmases gone by, and look forward to Christmases to come. I am so blessed to be able to spend Christmas with the ones I love, and to treasure the precious gift of God's son. I hope that everyone has a very Merry Christmas, filled with love and blessings. May we all remember what we are truly celebrating on this glorious day.
"For unto you is born this day in the city of David a Saviour, who is Christ the Lord." Luke 2:11
"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace." Isaiah 9:6
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Christmas is truly a celebration and as I said in my previous post the biggest birthday, where we are the ones who receive the perfect gift. I have been telling myself that I am going to focus on the birth of Jesus, and I will do my best to remember what were celebrating when our family is opening gifts. With the roller coaster my family and I have been on, Christmas (and all holidays), family, and tradition have become so important to me. I cherish the tradition and memories of Christmases gone by, and look forward to Christmases to come. I am so blessed to be able to spend Christmas with the ones I love, and to treasure the precious gift of God's son. I hope that everyone has a very Merry Christmas, filled with love and blessings. May we all remember what we are truly celebrating on this glorious day.
"For unto you is born this day in the city of David a Saviour, who is Christ the Lord." Luke 2:11
"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace." Isaiah 9:6
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Subscribe to:
Posts (Atom)