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
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