More Lemonade

This past Thursday I had an appointment with Dr. Carrasco (pediatric rheumatologist). He was extremely concerned at how bad I looked symptom wise. I had a lot of joint swelling, pain and stiffness, and a lot of muscle weakness as well. The rash on my face was very present, and my hands and feet were turning blue, and purple, and were very cold to the touch, and my tachycardia (high heart rate) has returned. He hasn't seen my hands and feet do that since I first saw him as a sophomore in high school. He (as well as Dr. CB the Hem/Onc doctor) was very concerned at how quickly I was declining, as the weekly Methotrexate chemo was being lowered, and I was at 20mg (down 15mg from 35mg). I told both him, and Dr. CB, that I know the goal is to taper me down 5mg every 2 weeks, stay at 20mg for about a month, and then go back down and eventually be completely off of it. I know that being on chemo long term, especially at the dose and frequency that I am on, has risks, but I feel that since I am getting worse so quickly when we went down 15 mg, that I am afraid going down even more could be very bad. I know the Methotrexate is not working as well as its supposed to, but its keeping me at a "steady decline", and I fear that going down would cause things to explode. Could their be a possibility that we stay at the 20mg longer? Dr. CB even suggested going back up a little bit and doing a slower tapering. Both Dr. Carrasco and Dr. CB agreed that going down would not be good (15mg is given by injection as opposed to IV, and having been on almost every dose of Methotrexate, I feel it would be the equivalent of injecting water). Dr. Carrasco decided to increase it back up to 25mg, and he would reevaluate me in two months. If there would be any benefit from it, it would take 2-4 months for it to show up. An increase of 5mg doesn't sound like a lot, but its 25% more, which is quite a bit. I definitely had/have mixed emotions about the increase of "lemonade". I was hoping that he would keep it at 20mg, but I know that this is better. There is a concern that because I have been on Methotrexate for so long, and have been at 25 before, that it could not have any effect on me, but we shall see. Dr. Carrasco also recommended joint injections of steroids in my ankles and wrists, which will be done by the interventional radiologist. I have also been having issues where my knee(s) pops in and out of place, and people experience that all the time, but because my joints are so bad, and the muscles in my thighs are so week that they can't support them, the fall risks becomes high. When we thought that I was going to get the BMT, I visited the orthopedist about this problem, and he said that if he went in and fixed it, while my muscles are so weak because my disease isn't under control, it wouldn't be beneficial. He said after you have your BMT, and your disease is under control, and your muscles are stronger, come back and I will fix it. Well obviously the BMT is not happening, and I am still having this problems. I was doing exercises to keep the muscles conditioned as much as I could, but my joints and muscles got so much worse, that the PT told me to stop because I was losing more muscle then I was conditioning and strengthening them. Both the PT and Dr. Carrasco said, that because I can walk short distances with the walker, that is my exercise, and I need to maintain that as much as I can. If I fall, then my ability to walk would be compromised. Dr. Carrasco said because I am not on any biologics (Enbrel, Humira, etc.) now is the time to get me knee(s) fixed. I meet with the orthopedist a week from tomorrow to discuss what to do. As you can imagine absorbing all this information is mind boggling, and we are trying to process it as much as we can. 

On another note, I have been staying with my mom since 4th of July, and will continue to until she goes back to work Friday, July 26th. Both she and I don't understand why their first day back is a Friday, instead of Monday the 29th, but who knows? We are leaving tomorrow for the Hyatt Hill Country Spa & Resort in San Antonio. We are so SUPER excited to be able to get away. Its nice because San Antonio is not a very long car ride, but its far enough to where you feel like you've gotten away. We both can't wait to go to the spa, and I am really looking forward to my massages, particularly having my feet and ankles rubbed, because they are so swollen. I could have my feet and ankles massaged all day, everyday. I am just trying to stay as relaxed and stress free as possible. I have gotten to see some friends, and look forward to seeing more of them. Two of my best friends and I are trying to plan a trip in August, but with all three of us living in different cities, and having busy schedules, it complicates things. But we are going to try are absolute hardest to make it work. 

Lately, I have been turning a lot to scripture, prayer and God, to help me deal with all that has been going on. I expected to have a worsening of my symptoms, but didn't expect it to happen so quickly, and dealing with that has been a challenge. My family and I have been having to practice patience A LOT because of "chemo brain" and fatigue. I have been having difficulty focusing, and remembering things, such as if I have told someone something already or not. I have had times when it has taken me 30 minutes just to get through a paragraph. I have been relying on God to help me deal with this, as well as with the increase in physical symptoms. I love what Colossians 1:11 says, "...being strengthened with all power according to his glorious might so that you may have great endurance and patience,..." I think this scripture verse is so wonderful, because it helps me to know that the Lord's power is what is strengthening me so that I can have endurance and patience, two things that are necessary in dealing with everything. Trusting and relying on God is an important and difficult thing to do. But I know that by surrendering everything to Him, I will be given the strength and endurance to get through this journey. Without God, I am weak, but with Him I will have exceedingly and abundantly more than I could have ever imagined. And that gives me peace. 


Joyful Love 
         &
Blessings In The Lord
Alexandra K. Acosta