Hello world! I left the blog-o-sphere for a while. As I have been busy going back to work things have been hard. Really hard. Not fun, difficult, and painfully hard. I often feel that I am to be a role model for so many that it is difficult for me to admit when things are hard, when I don't feel well, when I don't have the best attitude or I'm even cranky because I'm in pain. The truth is I have bad days, I'm not always this wonderful example of positivism and perseverance, even discipleship. I need to admit that, I need to come clean in order to move on and tell you what is going on.
The results are in and here's what's up on East 8. My LP came back positive which is negative - LOL. What I mean is that it is not a good thing that cancer is in my spinal fluid. This is also called CNS disease (Central Nervous System).
The problem is that this excludes/prevents me from participating in the t-cell treatment in Philadelphia. We heard from my team in Philly this morning however and the time line has been delayed. The plan now is to do 2 spinal taps (LPs) whatever you want to call it - they take a huge needle and put chemo in my spine - so the plan is to do 2 of those a week until I have 4 in a row that are clean. At that point I will qualify for the t-cell treatment.
Problem #2 - the tumor in my arm. Technically they call it a "chloromas" but it's basically a tumor, a big lump of cancerous cells. This is growing on my right humorous (insert joke here) and is the cause of a great deal of pain. In fact we believe the leukemia has been the main source of the severe pain that I have had in my bones - particularly my joints.
I had my first radiation treatment on my arm this morning. The radiologist explained that leukemia has a difficult time with radiation and that he expects it will be quite successful even at a low dose. I have another radiation treatment tomorrow and the 3rd and final session on Friday.
The last test result that we received was an update on how much leukemia was in my bone marrow. After my first round of blinatumomab it was 2%, after the second round it was 7%, this time around it had wiggled up to 9%. In a group of bad test results this was one thing to be happy about. The percentage of disease in my bone marrow has remained low.
So the plan for now is to under go chemo via lumbar puncture twice a week and to attack the leukemia systemically using a drug called vincristine and some steroids. This is not my first rodeo. I'm sure I will lose my hair and feel sick and tired and tired and sick. The best part is that I still have hope. When I hear from Dr. Porter in Philadelphia, and he expresses that he is thinking of me often and when others express their empathy and prayers, I know that I am not alone. I have a team! I love each and every one of you.
Thank you for expressing your concern and using this opportunity to serve our family. I would be the first to tell you that I understand this cancer crusade has been going on for a long time. If you're tired or burnt out, or just need a break I get it.Thank you to all of you and those of you who continue to serve and love.
I wouldn't have made it this far with out your help and the continuous flowing love of our Savior. To ponder his mercy and love is a gift. I am so grateful for each day. Even the tough days. They refine us, they define us, they make us prove who we really are. I am grateful for my Savior and share this with you in his sacred name of Jesus Christ.
Amen.
No comments:
Post a Comment