Tuesday, July 24, 2018

Trial Update

The whole situation with this trial has been really frustrating. It was originally supposed to begin at the start of July, but got pushed back a month. Now the trial has been delayed a few more weeks. Currently, I am scheduled to have my scans and pre-testing the week of 8/20. Then, I'll have surgery the following week. The trial keeps getting delayed because the facility used to make the vaccine needs to be updated to meet FDA code. It is a lengthy process to become Phase III ready.

I'm so stressed out right now because there is so much uncertainty, and so many ways things can go in the next few months. We are certain that this nodule is a Ewing's recurrence, but we are letting it continue to grow/spread unchecked for months. I am worried about the upcoming PET scan. I was very skeptical when I didn't have a PET scan last summer. I'm relieved to get the rest of my body checked out, but I'm afraid of finding other spots. I'm worried that I will be placed into the control group for the trial. I have a 50% chance of that happening. I'm also nervous about how I will do with the chemo. I've seen a lot of people not do well with the side effects, and I hope that I fare well.

I have already switched over to the diet I will be adhering to when I'm on chemo. For the probiotics I'm eating either a greek yogurt or a cup of kefir with a glass of milk everyday. According to my doctor that is all I'll need to get the probiotics. As for the protein, I've increased my consumption by 25%.

The other thing I'm just starting to work on is getting in better physical shape. Last year I lifted weights all summer with my dad until I had surgery, and I believe that being in good shape helped me recover so fast. I have about a month until surgery if it doesn't get delayed again, so I'm going to start exercising now. Today, I went to the park and shot around for a little under an hour at a moderate pace. My goal is to exercise for 3-4 hours a week from now until surgery time.

It's almost been a year since I moved to Richmond. Even though this year has opened up a lot of old wounds, I still look back at this past year very positively. I learned great values and discipline from my family, so I was really able to hit the ground running when I moved out on my own. Also, I really grew in my role at work. My team has been really impressed with what I have brought to the table.

I think in some ways this time will be much more difficult than my last time doing chemotherapy. One reason is that I have a lot more on my plate. I have more responsibilities than I had last time like working, paying bills, buying groceries, etc. I also won't have the same support I did last time. I live by myself down here in RVA. My family will make some trips down here when they can, but I don't expect them to that often.

Well that is all for now. I will let you know if anything changes with my treatment plan.