Over A Week And Still Sick

It has been over a week since I started feeling ill, and I am still under the weather. It turns out that I have a very bad sinus infection and a bad bronchitis. I am on two antibiotics and have to do breathing treatments everyday. The doctors were concerned about me developing pneumonia and being hospitalized, luckily that didn't happen. I did have to go to the ER because my fever went up, but luckily I was able to go home and not be admitted. The infection how ever was at a time where my bone marrow is ver suppressed, so the doctors had to watch me carefully. I am just trying to rest and drink lots of fluids, and I know it will take some time for me to be 100% infection wise. I know that severe infections can be a side effect of chemo, but I know that God is always with me, and will protect me through this entire process. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Under the Weather....Yet Again

This morning I went the doctor because of a soar throat, nasal congestion, and a low grade fever. It turns out that I have a nasty sinus infection. I feel absolutely miserable, and it was just about a month ago that I was sick with a cold. I know that this is par for the course when your on chemo but it still sucks to no end. Luckily, the doctor started me on an antibiotic, and my fever isn't very high, if it gets over 100.5 and nearing 101 than I have to go to the ER, I'm crossing my fingers that that doesn't have to happen. If anyone has been sick with a cold or flu, and has had a fever, than you know what its like when your body, muscles, and joints just ache all over. When you have arthritis, and other autoimmune issues, its that x 10. Im just trying to stay relaxed drink, hot tea, and getting plenty of rest, what sucks even more is that it is cold and rainy outside, which makes feeling bad even worse. I am just trying to lay low and get over this thing as quickly as possible. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Can't Stop Sleeping

At my last chemo treatment, which was here in Austin, my blood tests showed that not only was my white blood cell count low but I was also very anaemic. Both of these uncomfortable medical problems cause one to be extremely fatigued. I find myself taking three hour naps in the middle of the morning, and even an after noon siesta, and still going to bed at nine o'clock and sleeping ten hours. My mom says that this is completely normal for someone who is a anaemic and going through chemotherapy. But still, I hate that I can't stop sleeping. I feel as though I am lazy and not doing anything, but part of me knows that my body needs rest to heal. For those of us who have a chronic illness or are going through need to remember that there is no reason to feel bad about how tired and fatigued we are or how much we sleep. Our bodies are not like those of a normal healthy individuals, and it takes more energy for us to do simple tasks. So for those who think were just being lazy, you try living just one day in our shoes, and you will see why we are so tired, and why we can't stop sleeping.


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Doctor's Visit

This past Thursday was my doctor's appointment in San Antonio with the Hem/Onc doctor. The appointment went well, the blood tests showed that the chemo is doing what its supposed to, because I am neutropenic, which means that my bone marrow is suppressed so I have to be extra careful of germs and getting sick, especially during cold and flu season. We also learned that I have something called Post-thrombotic Syndrome (PTS), its a condition where I have more pain in the are of the clot is, because of blood flow restriction due to the clot. The pain can last up to nine months, but thankfully the doctor prescribed me some medicine that should help with pain. I am also going to be continuing with my chemotherapy, and hope that I can have all the nausea and other unpleasant symptoms under control. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

ER and Cold

Last Wednesday, I went to the ER because my neck, on the side where the clot is, was very painful and swollen, my arm on that side was also swollen. I was also feeling faint and had a headache, I nearly passed out at the dinner table. Concerned, my mom and grandfather took me to the ER to get the clot checked out. A CT scan of my neck was done, and so was blood work. I was in so much pain, that they had to give me dilloted for the pain. The scan showed that the clot was the same as the previous scan, and the blood work showed that my white count was a bit low because of the chemo. The doctor who examined me knew that I was immunocompramised, and still chose to examine me even though she had a cold. She was coughing, sneezing, and blowing her nose, and she still examined me. Unfortunately because of my weekend immune system, I developed a cold/virus that I caught from the doctor. All weekend I was miserable. I had body aches, congestion, headaches, a soar throat, and a slight cough. Im doing a bit better today. Because of my immune system being low, it takes me longer than a normal person to get better from things, and my symptoms are more severe. Luckily I wasn't running a fever with this virus, so that was a good thing.


My family, as you can imagine, was very upset at the doctor for coming around me when she was sick, it was very unethical. We couldn't say anything to her at the time because we didn't want to upset her, and have that hinder my treatment. My grandfather did send an e-mail to the HR department, and hopefully she will be talked to about the incident. If a physician or anyone who works with patients is ill with something like a cold or any other communicable diseases, they should not be at works, and putting people at risk for becoming ill themselves. Its just good old common sense. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Pre and Post Surgery

Yesterday I had a small surgical procedure, that was my eighth one this year. Although the procedure was something minor, each time I have to go into the operating room, or under anasthesia. I still get nervous each time. I usually am not nervous about he actual surgery, but more going under anasthesia. While going under, you feel as though you're losing control. Having experienced it so many times you not only get used it, but some how come to like it. I know that sounds crazy, but one of my friends who as gone under anasthesia probably more times than I have says he likes it as well. People like my mom and grandmother who have had a  few surgeries don't like the feeling of it at all, so I guess it depends on the person.


Then there is the pain when you wake up. Even though they tell you might be in pain, you are still not prepared for how much it hurts (depending on how invasive the surgery is), luckily they I have IV pain meds that just knock you out. The first few days our the hardest. Sometimes you feel as though the pain is worse than it was before the surgery, but it is a different kind of pain. For me, what helps the best , is knowing that the surgery is going to help me in the long run. Keeping this in mind, pushing through the pain, forcing your self to get up and move around, and taking your pain medication so that you don't let the pain get ahead of you will help you make a fast and safe recovery.


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Clots and Chemo

So yesterday I went for my second dose of chemo, of course it was so much fun sitting in a chair from 9:00 AM to about 4:00 PM and then coming home with a horrible headache and throwing up, and feeling as though I have a terrible case of the flu. Waking up today I didn't feel much better, except for the headache being gone, I'm still very nauseous and achy. I hate the fact that after every chemo I have to take a pump home full of fluids and a medication called Mesna that helps protect my bladder and kidneys from getting damaged by the chemo. We will hopefully know maybe by month 3 or after the third treatment whether or not the treatment is working. 


Now, the issue of what is going on with blood clot that is in the jugular vein in my neck and extends all the way to the brachial vein. Even after being on the anticoagulants for a little over a month the clot shows now signs of getting smaller. Because of what the latest imaging shows I had to go on two blood thinners at the same time, one being a shot and the other being a pill. I developed horrible bruises from the shots so my doctor took me off of them and increased the dosage of the blood thinner pill I am taking. Hopefully this will help the clot go down. The doctor says that busting the clot directly with clot busting medicine is to risky with my history, so that probably will not be done, but who knows. As for now I am just trying to take each day one day at a time and get through chemo and all the joys that comes with it. I know with my family and God, I can get through this.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Side Effects

The first week after chemo was harder than what I had expected. I had deal with almost constant nausea and vomiting, and aching all over, feeling as though I had the flu. I've had to watch what I eat to making sure I don't eat anything that makes me sick. Luckily, I have medication that helps me get through and deal with the side effects. My hair started to come out, so I shaved it all off. It will be interesting to see if more will come out later. Im trying to just learn how to deal with feeling this way after chemo, because I will have to deal with it for the next 18 months. I know that I have many people supporting me through this process, and knowing that keeps me fighting. No matter how hard it is, how bad I feel, I'm never going to stop fighting and give up. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

First Chemo

Yesterday was my first dose of chemotherapy, I pretty much slept through it and left feeling pretty blah. I've had some nausea and vomiting these past two days, and the doctor said I would start feeling better around week 3, and hopedully sooner. They say my hair will start falling out 5 to 7 days afterwards, and my counts will start to drop 7 to 10 days sfterwards as well. I'll be going back in 4 weeks for my second dose of chemo, which I think will be done in Austin. Now that I know what to expect from chemo I'm not as nervous and scared about. I hope this treatment will reak some benefits, which we should start to see around month 3. I know that God and my family will help me get through these next 18 months.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Treatment Plan

Yesterday, I met with the Hematologist/Oncologist in San Antonio and my treatment plan was set up. I am doing 18 months of chemotherapy, with one IV drug (Cytoxan) and two oral chemotherapy medications. I go back to San Antonio on Tuesday for pre chemo hydration, and then on Wednesday get my first dose of Cytoxan. I then go every 4 weeks after that for more chemotherapy. I admit that I am nervous about everything, but am relieved that we can get started so quickly. The doctors say that at around 3 months we will be able to start seeing some effects if the drug is working. I know that God, my family and friends will help et me through this, and I will soon be on the road to recovery. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Discharge

Today was discharge day from the hospital, my family and I are so thrilled that I am out of the hospital and back home again. I still need to be on blood thinners for the blood clot in my vein, and I need to follow up with a hematologist to make sure my counts are good. I hope to be going to San Antonio within the next couple of weeks to talk to the the doctor about my chemo treatments, and hope to start chemo as soon as possible. Right now i am just trying to stay comfortable and manage my pain and am looking forward to starting treatment as soon as I can.


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Hospital Stay

Well, there has been so much that has happened since my last blog posting. Last Tuesday, the day after Labor Day, I went to the ER due to severe neck pain, and some swelling, along with a fever. We thought I had a virus and an inflamed lymphnode and so did the ER doctor. While in the ER they found that my port also wasn't working. They decided to admit me, and did a CT scan that night. The next day they told me that I had a blood clot in my jugular vain and fluid behind the clot. The news was given after a code was called because I had difficulty breathing because of the massive swelling in my neck. My port was taken out the same day as the news of the blood clot, as it probably was the culprit for the clot. I continued to have terrible pain and swelling, so late Friday afternoon I had surgery to remove the fluid. The doctor said their was a good deal of fluid, a lot of swelling, and the entire area looked "very angry". Since the surgery my ability to swallow and breathe has drastically improved. I am now able to eat solid foods and no longer need oxygen to aid in breathing. I will have to be on blood thinners for a long time they don't impair my ability to begin chemo, and the infectious disease doctors cleared me to start chemo in 10 days. I'm still on the PCA pump to help control my pain in my neck, but that is improving as well. I still have some swelling in my neck, and quite a bit of swelling in my left arm, which is the side that the clot is on, but hopefully it will resolve soon. i'm hoping to be able to go home soon, and then start my chemotherapy treatment. Were not sure if the HiCy treatment is still what the plan is, as we may go back to 18 months of chemo, but I will hopefully no more soon. I will continue to post on my progress and give updates. Your thoughts, prayers, and well wishes are greatly appreciated!!!!


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Recovery

So today is the day after the surgery to have my new portocath placed. The surgery went pretty well. The only interesting thing was where my old port was their was some kind of goopy liquid, the surgeon decided to culture it and I have to go back and see him on Thursday to get the results of the culture and have the packing removed. We are hoping that the culture comes back negative, because if I have another infection I would have to do another 3 weeks of antibiotics, and chemo would be delayed even more. Right now we're just trying to keep positive thoughts. I'm extremely sore, as the 1st day after surgery is always the worst. I've pretty much have been doing nothing but sleeping. I know I will get stronger each day, and hopefully soon will be able to start treatment.  


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Update

This past Wednesday I had two doctors appointments, one with my rheumatologist and one with a surgeon. My rheumatologist appointment went OK. The doctor said that he agreed that the new HiCy treatment was the best approach. He feared with how bad my conditions are, that the 18 months of chemotherapy wouldn't work. Unfortunately I had no improvement with the plasmapheresis, 3 days of IVIG, and 3 days of high dose steroids. I also need to have a swallowing study done as I have some difficulty swallowing at times. The surgeons appointment went well, and I am having my new portocath placed this coming Monday. Right now we're just trying to get everything scheduled, from when I start chemo in San Antonio, to setting up a Hematologist/Oncologist here in Austin. I'm tired of waiting for things to get started, but I just need to have patience and it will all fall into place. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Brain Fog

Living with multiple autoimmune diseases and taking so many medications can take a big toll on ones memory. I find that having low energy and a ton of fatigue, makes remembering to do things sometimes impossible. I find myself forgetting where I put something like a pair of shoes, or my sunglasses. The brain fog is absolutely miserable. I'll walk into a room and forget why I'm there. Or I forget what I'm going to say, which sometimes makes me feel like an idiot. I know saying, "I forgot," all the time to my family can get pretty annoying, as they wonder did she really forget, or was she just being careless? For me to help get through this unfortunate side effect of the diseases and medications, I found solutions that can help. I try to put things in the same place so I'll always remember where they are, when i'm trying to study I'll only do 30 minutes at a time and then take a break so I don't get overly fatigued. Its hard dealing with the brain fog aspects of my disease, but I just learn to cope as best I can, and try to have as much patience as possible. By the grace of God, I hope to get through it smoothly. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

My Illness Is Not My Identity

Yesterday when I was in Sunday School we were asked to write down words or even slogans that describe us or who we are. As I was composing my list i could think of many things; faithful, energetic, opinionated, fun, loyal, caring, and others. One word however, that did cross my mind that I did not put on the list, was sick. One of the struggles that people who are living with a chronic illness have, is being identified by not only myself, but other people as a sick person. When I have periods of feeling miserable, numerous medications, hospital stays, and doctors appointments, it can be hard not to be seen or feel as anything but a sick person. The key is to remember that I have other interests that make me who I am besides my illness. It's important to keep my mind alive, and continue to go out and do things when I can so I am not a hermit. I know from experience that I'm not just a sick person. I am not my illness. But I do have faith that God will make me more than a sick person. Than I am a strong person. 


Joyful Love 
         &
Blessings In The Lord
Alexandra K. Acosta

Hope That I'm Going Home Tomorrow. Good News or Bad News?

I found out form the doctor today that there is a more than likely chance that i will be allowed to go home tomorrow. For me, this is mixed news, because in one way I am happy to be going home after being here in the hospital for a little over a week, but the bad news is, I am being discharged without receiving my chemotherapy. Chemotherapy will be in at least 3 to 4 weeks, and I have to come down again before chemo to have a surgery to put my third port in. I know right now that both my faith and patience are being tested, but God has a reason for this. Its easier said than done to say not to think about the waiting process, but the saying is completely true. Hope, God, and Faith is what gets me through the day, and with those three things I know I can do and get through anything. 


Joyful Love
         &
Blessings In The Lord 
Alexandra K. Acosta

Boredom

It's two minutes past 9:45 and I'm writing this to discuss boredom while in the hospital. It gets boring after watching TV day after day, and its hard to focus on reading. I guess this is just part of being in the hospital. Im sure those of you who have spent one or two more days in the hospital, you may know what it feels like. I've said before that patience is an important virtue to have. I guess God is trying to teach me the important of patience by having the chemo and port surgery delayed. I know that somehow with God's help i will be able to have patience to deal with the delayed surgery, treatment, and boredom. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Setback

This evening, the doctor came in and told me that chemotherapy will be delayed due to a small skin abscess. If they gave me the high dose with this small infection i could develop sepsis, which gets serious very quickly and could kill me. I am upset about this setback, but I know that it is for my own safety. I also found out that I have to have another surgery to get my third port in. This port is different than my other port because they can have access to two different lines at the same time. Beside this setback/delay I am doing OK ,I am very swollen right now but doing the best I can to handle it. I know that God makes everything happen for a reason, we may not like it, but somehow it will make us stronger. 


Joyful Love 
          &
Blessings In The Lord
Alexandra K. Acosta

Day 3

It is day 3 of my treatment and the final day of my plasmapheresis treatment, I am happy because I can finally get my Quintin Catheter removed. One thing that doesn't make me happy is that my platelet count is low, so I have to get 2 units (2 bags) of blood, which will go over 3 hours each, so a total of 6 hours. I'm feeling OK and today can hopefully go out of the room and go in my wheelchair around the floor soon. I've still had some pain, stiffness, and swelling, but the morphine helps with pain. Tomorrow I start IVIG, at least its at a lower dose than what I usually get so I hopefully wont get so sick. I know that with God's help I can get through this. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

And The Fun Begins

Well today is my second day here in the hospital. I have already had my catheter placed for plasmapheresis, and I had my 1st treatment of the plasmapheresis which took more or less about an hour and forty five minutes. I'm a bit tired from it but am OK. I have to have two different bags of fluids going through me, each on a different pump. They are pretty much doing every test possible to make sure I'm OK for the maximum dose chemotherapy, the treatment is what they call "sub-myeloblative." I get bored at times just sitting here in the hospital, but they can bring me stuff to keep me occupied, and at least I have my computer and ipod. I will continue to have updates. Right now I;m feeling OK but am tired. Doctors say I still have a high SED rate and CRP which means I still have lots of inflammation. I'll continue to post. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

The Time Has Come

Well, the time has come for my mom, grandfather, and me to leave for San Antonio to begin my treatment. We are leaving tomorrow afternoon, and I have been counting down the days until its time to leave. I have been busy packing and buying things to prepare for my trip, such as hospital wear and scarves and things for when my hair comes out. The fact that the day for me to be admitted to the hospital is almost here, makes the situation a lot more real. I know I will be receiving top notch care, but I still can't help being a bit anxious and nervous. All I know, is that I must be calm and have patience, and have faith that God will be with me throughout this whole process. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Trusting Your Gut or the Doctors

By the time we got the new treatment plan from the doctor on Tuesday, I had just gotten comfortable with the old treatment plan. The doctor faxed me 21 pages worth of information that I read every word of, and of course I did as much research on the internet as I possibly could. Still I was more comfortable with the original treatment plan. I guess it was because I couldn't ask the doctor all the questions I wanted to and so that made me a bit uneasy about it. However, my doctor has spent countless hours researching and talking with other doctors around the country, and they decided that this new treatment plan is the best. I trust my doctor and I know he has my best interest at heart. But the question still arises, do we trust our gut, or the doctors?


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

New Game Plan

Today, the doctor called with a new game plan. I have posted that the doctors told me I'd be going for 18 months of treatment, but apparently that has changed. I'm still gping to get the plasmapherisis and IVIG, but instead of 2 days of Cytoxan, followed by Cytoxan every 4 to 6 weeks for 18 months, there going to give me the highest doses of Cytoxan for 4 days. This will knock out my immune system completely. I will be given Neupogen shots to help regenerate my immune system. Hopefully when it comes back I'll be cured and have no signs of disease. This process will not take 18 months, and will only require one large round of chemotherapy. I will post updates when I can about whats going on, and maybe soon I'll be cured.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Waiting Game

In addition to the already scheduled doctors and PT (physical therapy) appointments that I have scheduled this week, and am waiting to get over with, I am not desperately but anxiously waiting for my doctor in San Antonio to call and tell me when to head on down their to begin the treatment process. I know he wanted to start as soon as we could, and so do I, but at the same time I don't want to drive myself crazy over this. 


The waiting game is something everyone with a chronic illness knows all too well, whether its waiting for the results of a test or a specific appointment, or even a procedure. The waiting is the worst part. For me its horrible because I'm not on any "real" treatment except IVIG so I've been feeling miserable for a long time. I want to get started because I would rather feel bad from the treatment, knowing I am doing something to get better, than not really doing anything at all. 


Patience, however, is a very good virtue to have, and while waiting for things my patience is truly tested. I must not drive myself crazy thinking about when will I receive the news I want, but instead be patient and go about my life, as patiently as possible. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Pre-Chemo Hair Cut

Here is a picture of my new haircut. I decided to cut it short, to make it easier for when it comes out because of the chemo. It was bittersweet. I like the new look, but I was sad to get rid of my curly locks! 

In The Chair

Well, since this blog is about my adventure throughout my illness and what's ahead to come their are many different challenges that I will be having while going through treatment. I chose the title Alex's roller coaster because my treatment journey is a true roller coaster, and today's adventure was getting into the roller coaster cart and buckling up.

Today I went to the hair salon and chopped off all my hair in preparation for my intensive chemo treatment. I did not pull a G.I. Jane and shave my head I just cut it extremely short. After cutting it it made the treatment that I am about to star, hopefully in the next few weeks, a lot more real. The doctors have all said with the chemo I'd lose my hair, so I thought why not cut it short to make it easier.

The treatment I'm undergoing will last for about 18 months, which is a bit nerve racking, but I can handle it. Getting into the the cart and buckling yourself in is the first step to riding the roller coaster, and that's exactly what I did by cutting all my hair off. It might be a while before I blog again, but I hope that this journey is one that will not only cure my disease, but help me grow both spiritually and physically. I will definitely continue to have posts about my journey through treatment for curing my autoimmune diseases.


Joyful Love
         &
Blessings in The Lord
Alexandra K. Acosta