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