Signs

While we were on the beach in Sooke, I kept seeing these cool stones that had lines and markings on them. I kept looking for one that had a letter on it or a symbol of some sort.  I was looking for a stone to keep that would have meaning for me and remind me of our trip and the harder I searched the more impossible it became to find a stone that was special to me.  I started to become really frustrated by the process and it kept throwing me mentally to different places in my life where I was looking for signs.  I remember looking at colleges asking God to show me clearly where I was supposed to go.  While I was on a tour at Dickinson I found out that their mascot was a Red Devil and I nearly broke out in tears because I thought that was a sign that I didn't belong there.  When I was in my early twenties I spent an inordinate amount of time looking for signs about who I should marry and when God would send the right "one".  It seems like for every choice in my life I've spent a lot of time waiting for God to send me some clear sign.  I have always wanted to know what choices other people made and their outcomes.  I remember researching babies with reflux and how it affects their adult life, trying to learn about what ADHD looks like in a two year old, studying every decision until I felt that I had exhausted the options, but really I think I would just exhaust myself.  I knew as I was patrolling the beach that God doesn't work on demand and wouldn't provide a special rock just because I wanted one.  And yet, for some reason, knowing in my heart my answers weren't in rocks, I still found myself searching. I've been reading about other brain tumor patients and their journeys, looking for signs of what my journey will look like, looking for comparisons.  I've been reading forums, connecting with new people, trying to figure out what's next for me and for my family and yet I think for the most part this is idleness or misplaced energy.  In John 4 Jesus tells the man looking for his son to be healed that if he doesn't get a sign he will never believe and though that is hardly true for me.... i've never been one to make "deals" with God, I knew that those rocks meant nothing to me and that all of the hours searching for signs to assure me of one thing or another were likely wasted moments that could have been spent full of joy and laughter.  On the flip side, I've always been a big believer in noticing moments.  When we were in Iceland years ago we saw lots of stacked rocks and looked them up to find that they were Cairns -- stacked rocks to mark a time or a place.  Throughout the Bible and throughout history people have stopped where they were to take note of a moment in time, to build an altar, to give thanskgiving on a hill, to take a mental note of a special moment they didn't want to forget.

For us this weekend was a chosen moment to laugh and play as a family because we know that the next few months at least will be challenging for us.

We looked through all of our options, had our doctors send us their research and studies, had friends in the medical field read the journals for us and help us to be fully informed. We decided on a newer type of radiation called proton therapy which is normally only used for children and will be a fight with our insurance,  but will reduce the amount of radiation that can harm the healthy cells in my brain.  The downside of this radiation is that it will most likely cause hair loss.  It will last 6 weeks and be done concurrently with the chemo treatment.  For chemotherapy we chose a pill form that has few side effects and though it doesn't have as many completed clinical trials the research shows it to be highly effective and may likely soon be the first line of treatment for brain tumors.  This pill is taken 5 days out of every 28 and may need to be taken for up to 2 years.  During radiation and during those 5 day cycles (and the 5-7 days afterward) I will likely be out of commission, tired, and lethargic.  The great news is that the pill can be taken anywhere and doesn't need a port or an IV.  Many people on this pill treatment still work full time and lead fully normal lives.  I'm happy to have this option that will allow me to help keep our family life as normal as possible.

I go in tomorrow for a radiation planning meeting to be fitted for a mask that will allow them to deliver the radiation at the same place each time.  Next week I will go in for a chemo "class" at my oncologist's office before I can start taking the pill and I'm hoping to have a schedule soon of when all of this will start.

In my Bible study this morning they asked how they could pray for me and I responded that we are really in a "lull" right now.  We are post surgery and enjoying these joyful times, trying to soak up the energy I have with normalcy.  We really don't know what's ahead as none of us have ever been through this or anything like it.  So, our prayer is really to just have fun.. to stop searching and to trust that God knows what is next and has it all under control.

I have noticed that my vision seems to have improved quite a bit this week.  I did walk into the doorway tonight pretty hard but that was the first time in a while.  I feel more confident picking things up on my left side and less unsure of myself visually.  I am still struggling with evening exhaustion and it's hard because those hours are the times when our family needs more of my attention.  When both kids need homework help, dishes need to be done and it's time to get ready for bed, all of the voices and the noise are confusing and challenging to me in a way that is very different than before.  I often need to retreat and have silence and that is also often when headaches occur. But I also have to take a step back and remind myself that I am still just over a month from brain surgery!

I am ever so grateful for your continued prayers for my healing, for no recurrence of the tumor, for smooth treatments with few side effects, and if there are side effects that I will be at peace with it all. I love getting your notes and cards and just your message of friendship, love and comfort.  If I don't respond, know that it is often because there are multiple things happening and I can no longer multi-task as I did before (Paul says I can finally understand how he hasn't been able to multi-task all of these years!) I am unable to talk to a child, answer a text and think about something else, let alone do something else.  I have to really focus on any one task at hand which is an amazing blessing of a change of pace. I am committed to being present to my kids and my husband and sometimes I have to catch up on other things later on and that is okay.

Phew.. i just realized how long this is!  Sorry!!! I hope you feel informed!  It's late here on the west coast and I'm off to bed.  Love and thanks and joy and peace... good night!