The Waiting Game Continues

This past Thursday I went to visit my Hem/Onc doctor in San Antonio. He told us that the plan is for me to have a sub-ablative Autologous Stem Cell Transplant. Sub-ablative means they won't completely wipe out my immune system they will only wipe it out like 98%. They have dot all their i's and cross their t's, so we will hopefully know in about a month whether or not we have the go ahead to begin the process. If they are able to do it, they will collect my stem cells, give me high doses of chemotherapy (not quite at the transplant dose) and then re infuse the stem cells back into me. In the meantime I have stopped my cytoxan and oral chemo and we will wait to hear from the doctors. Its hard to just sit hear and wait, but I know thats what I have to do. I will just need to be patient and leave it all in God's hands. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

The Good And The Bad

Sorry I haven't written in a while, I have just been tired and busy with appointments, treatments, and seeing friends. Anyway, a lot has happened since I last posted, both good and bad. But I'll start with the good. About three Saturday's ago I got to go to my dear friend Caitlyn's Senior Prom with her, and we had a blast. I met Caitlyn a few years ago at y support group for kid's with chronic illnesses, and we immediately hit it off. Not only do we both understand what its like because of our illnesses, but we have a lot in common besides that. She is a year younger than me but we don't care, and because she also is an only child we view each other as pretty much like sisters. Its also nice because our mom's our good friends and they can have someone that understands what its like to take care of a chronically ill child. Lets get back to the prom. So Caitlyn invited me to go with her because since I wasn't able to go my senior prom since I couldn't go to school she thought it would be fun to go with her. We were each others "dates." She goes to a private Christian school and there are only about 14 kids in the senior class so the prom is for all the high school students. All 4 high school grades make up the size of 1 senior class they may even have fewer kids. Before the prom me, Caitlyn, her mom and my mom went out to dinner at an italian restaurant and then headed to the prom at the Marriott in Horseshoe Bay. While we were at the prom our moms went out for a margarita and coffee. The prom was fabulous I knew a few of Caitlyn's friends and I met many more. Everyone was such open arms, they told me that Caitlyn told them all about me and how she admires me, it was so sweet, it just reaffirmed want a true friend Caitlyn is. After the prom we went back to Caitlyn's house watched TV for a bit and then went to sleep. The next morning we went to breakfast and just had girl talk (mom's included). The weekend was a blast and it was such a fun memory, and now I can say I got to go to the prom. 


Now for the bad. The Tuesday after the prom I ended up in the ER. What happened was, I had gotten up to go get my GED workbook, and my foot had fallen asleep from being swollen. I had gotten up to try to walk on it with my walker to wake it up the first step I took, my foot rolled, and I could hear and feel it pop. I screamed from the pain and my grandmother came rushing in. Now I have broken about 7 or 8 bones so I know the difference between a sprain or something fractured/broken. My foot immediately swelled to twice its size and my grandfather came home and took us to the ER. The doctor who first came to see me was just about to leave because his shift ended but he wanted to examine me before he left. He said that because of the way it rolled that it most likely was broken and he had seen the similar cases before. They did an X-ray and a new doctor came in and said it wasn't broken so we were relieved. However a day later it started to bruise and swell more and was getting worse and my home health nurse decided to take a look at it and said I needed to go get it checked by an orthopedist because there probably was a hairline fracture. So on Good Friday I went to see the orthopedist who has treated both my mother and grandfather. He took a look at the X-rays and my foot and thought it was a bad sprain, he then said it could be a hairline fracture and if it is it is so small its hard to see on the X-ray. He ended up putting me in a walking boot cast and said come back in three weeks and they'll do more X-rays. On top of that same week I came down with a bad cold and had to be put on antibiotics but luckily I was well enough to goto church on Easter. Then last Monday I had chemo and have been feeling miserable from it. My oncologist here in Austin is concerned because my muscles and joints are getting worse and she is concerned and almost didn't give me my chemo, she said i didn't look good. I got to San Antonio to meet with Dr. Patel on the 26th to discuss possibly a new treatment plan. They don't know what to do because the chemo has helped the lesions on my SI joints from the AS but it hasn't helped my RA or myositis. I am nervous about what's going to happen, but I know that it is all in God's hands and I need to have faith in him. I'll keep you all posted and try to blog more frequently. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Leading A "Normal" Life

For the past couple of weeks I have been working with an OT who comes to my home. He has been teaching me exercises that help to keep me from losing muscle strength, and to slowly help me increase my strength. We also work on things such as ho to conserve energy and to learn how to use adaptive tools to help me live a normal life. One of the things that we were talking about is how my grandfather wants me to live a normal life and be like any other 19 year old. I want that as well but my OT says that my normal will be different then his idea of normal. For people who live with a chronic illness or a disability our version of a normal life is different from that of a person who isn't in that situation. We learn to adapt to the world us, how to cook and make our own food, how to get around buildings so we can work, go to school, or go out, and how to take care of personal hygiene. Sometimes it can be more difficult than it would be for a healthy person, and sometimes we have to use tools or devices just to get through a day. But, just because we do things a little differently doesn't mean we are not leading normal, happy lives. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Infertility and Chemo

Being on chemo has many risks, one of those risks is infertility. different chemo drugs have a different risks of making someone infertile. The particular drug that I am on has a high risk of making me infertile. When I started my treatment I new that their was a chance of infertility but I didn't know how much of one. I recently saw a fertility doctor to see about what I could do to preserve my fertility. Due to the fact that I have already had 6 treatments my ovaries have already taken a hit. A woman of my age usually has between 10 and 20 follicles I only have about 5 or 6. The doctor than developed a protocol where today, I will begin to take hormone injections, as well as the oral medication I started on Friday to stimulate my ovaries so that I can have my eggs retrieved and then frozen. I will need to be on this medication for up to 14 days. There is a chance since my ovaries have taken a hit from the chemo that the stimulation medicine wont work and they cant retrieve any eggs. But we are hoping that is not the case. Please keep us in your prayers, and that I am able to save and preserve my fertility.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Losing A Friend

Last Saturday I received some very sad news that a dear friend of mine passed away from a lifelong battle with Cystic Fibrosis, he was only 21 years old. He had a lung transplant earlier last year and had been doing well and then started going into rejection but was stable, then in December before Christmas he ended up on a venelator in the ICU, doctors said his only hope would be another lung transplant, but he wasn't strong enough. His mother had to make the decision of turning off the machines. However, he woke up and said he wanted to fight, the doctor said that it was a miracle that he woke up and he had not seen anything like it in all his years. Still on the venelator he was number 1 on the transplant list. Sadly he eventually said he no longer wanted to fight because he felt that the chances of recovering were very slim, and he wanted somebody else who really needed a pair of lungs to get them. He bravely chose to die peacefully with his mother and brother by his side. 

Finding out that he passed was very sad, but I was happy that he was no longer in pain and he was now home with God. My friend had always been an inspiration and a beam of hope and courage and he will be greatly missed. I sometimes ask myself why good people like him have to die, but that maybe something we can't explain. We must accept that God wants us all to eventually come home, whether we as individuals or our families our ready. Everything happens for a reason.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Going Past The 3 Month Mark

When I started this 18 month long treatment, the doctor said that at about 3 month mark they would have to evaluate my progress to whether or not to continue with the treatment or go on to something else. Well I am pleased to say that I made it past the 3 months and this month will be my 6 month of treatment (give or take). According to my test results my SI joints look really good, which means the chemo is working. I still am having challenges with pain, swelling, and stiffness in my joints and still have difficulty walking. I am working and fighting very hard each day to get better and get back to having a normal life. I still have about a year left of treatment, and I am planning to get through it will all the strength I possibly have. I know that I could not have gotten this far without the support of God, my family, friends, and my medical team. I know that each day is a new day and I am thankful that God has allowed me to be able to continue to live each day to the fullest. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Sitcoms For The Sick

Being home quite often, and having days where I just can't do anything because I feel so miserable, I try to find different things that will cheer me up. One of those things happens to be watching sitcoms. Some of my favorites are a bit older such as the Golden Girls or the Nanny, but i also like watching the more recent ones such as Still Standing, Reba, Will & Grace, and The New Adventures of Old Christine. Watching these shows provides me with a sense of common relief and often perks me up. My grandmother always tells me to watch something funny so that I don't have depressing and negative thoughts, and watching sitcoms is a way for me to do that. It doesn't even matter what the subject of the episode is, as long as I can get a good laugh out of it. So if you ever find yourself in sad or depressing mood, sick or not, turn on a sitcom. You may think the episode is completely pointless, but I can guarantee you that something in the episode will give you a good hard laugh and perk you up. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta