Sunday morning we woke up fairly late but still made it to church on time, though a little sluggish. It was small group Sunday and Maeve was scared to go to Sunday School so I sat in the coffee bar and chatted with one of the pastors. She asked me a bunch of questions about my situation and we talked about having lunch soon. She then invited me to join in a prayer group at 11:45 for another member of the church named Bill. While I was home I noticed on the church email chain that someone else had also been diagnosed with a brain tumor and I was surprised but didn't know the name. As it turns out, this man is also 36 and was just diagnosed Jan. 2. He's a local teacher and was having different seizures that came in the form of hallucinations. After a biopsy they found that he had a grade 2, 7-10 cm. tumor on the right side of his brain. They were deciding this week on whether to operate or start with radiation (they decided on surgery this Thursday) At the benediction the pastor invited anyone who wanted to come into a room afterward to pray with Bill and his wife. About 15-20 people gathered, read scripture, laid hands on and prayed for them and for the doctors and for all that he would undergo this week. It was so incredibly stunning to be sitting with someone and praying for him and with him as he was about to undergo the surgery that I am recovering from. I wanted to be able to show him how "normal" I am just a month out of surgery and see if he had any questions. It was so comforting to have someone else who knows all the terminology and who is going through similar appointments and concerns. He knew about the genetic markers and the types of mixed tumors and the treatments.... it was as if he and I both knew Arabic and we were the only ones. I feel so blessed to be in the same community and to somehow have a "partner" or "friend" to travel this journey with in a way I never expected. Most definitely, the greater blessing was to be a part of this circle of prayer, most of whom were strangers to Paul and I and to know that they were lifting Bill and Paul and I up so fervently and with so much hope and love. How powerful to grasp his shoulder and to be in a spirit of prayer together, surrounded by saints and witnesses. It was one of the finest moments of "church" I have been a part of.
One thing I was explaining to our pastor Sunday is something that I think many of you might be confused about as well.
Brain tumors aren't "cancer." Brain tumors are brain tumors. What I have is a primary brain tumor which means it originates in the brain and can't exist outside of the brain. It is some tissue and cells in the brain that just decided to go wacky. A secondary brain tumor is cancer that starts somewhere else and travels to the brain. Bone cancer can travel to the brain and become brain cancer. A brain tumor can't travel to my lungs or liver or colon. Cancer can travel from the lungs or liver or colon to anywhere else in the body.
Cancer however is defined as malignant growth of cells. And there are cells growing in my brain that are malignant. I know this is confusing (it has taken me a little while to get a handle on it as well). So, the doctors are planning on trying to eradicate the 5% of brain tumor they didn't get out during surgery. Over the next few months they will hit my body pretty hard with radiation and chemo to try their best to get rid of those cells. And then we will do scans to see if the brain tumor returns or grows back or if there is a new tumor. If and/or when it returns it may come back in a different form that could be more malignant. If that happens and it is upgraded to a higher level, it is at that point (I think) that it is considered cancer. Many people have shared that they know people in similar situations who have never had a recurrence and that is our hope and prayer. And please, if you pray, pray first and specifically that the tumor doesn't return.
So if this is as clear as mud to you, join the club!
We meet tomorrow with our new neuro-oncologist and radio-oncologist and team of doctors who will handle my case. The appointment is at 3pm PST and I appreciate your prayers at that time to keep my heart focused where it needs to be. We will update you after these appointments when we are ready.
I know that for many of you, you have only seen me as a bubbly extrovert, but there is a side to me that is quiet and deeply private and introverted. I am open and willing to share, but it takes me time to process things and be at peace. A lack of updates doesn't mean we won't tell you what is going on, it means we will share when we are ready. I know that is hard to hear but please please don't take any of this personally. We LOVE you deeply. We are grateful and joyfully overwhelmed by your prayers and kind gestures and cards and notes and acts of service and love, but we have to take this one step at a time. The first step is to talk and pray with each other before we are comfortable talking and sharing with others.
Some of you have asked for our new address at the house we purchased. We are staying at the 3rd ave. address until the end of May while we do work on the house across the street. I'll be sure to share the new address when we are living there or receiving mail there. Thank you so much for your flowers and cards and notes. Each one is very special and meaningful to me.
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