My Linda and I were talking about if I were to ever write a book, the title would be:
My life is drama. It is one thing after another, then another, oh wait….and then another. ER visits, health scares, behavior issues, Dr. appt’s, brokeness, it keeps coming. Is this the average life? Really? Because I am pretty sure if you are a new friend, and either found this blog or heard about all this, you would slowly back away. Possibly with a fire extinguisher in hand. I don’t blame you! Just know with all the scary stuff are unmatched blessings that make us smile, remind us we are loved and protected, and keep us not scared. Moving on. Actually, lets pause here, I am giving you fair warning, this post is erratic and as good as it’s going to get. Sadly it’s taken 2 weeks to publish this draft.
I have come to LOVE parking lots.
Can’t lie, I miss having 4 hours to veg out and listen to WHAT I WANT to listen to-guilt free.
And this friendly face and the other 3 you can’t see.
And just like that, tssstttt.
This crazy controlled flame that has been the center of our attention for what seems like a significant portion of our life, has revealed some purpose and has burned out. I am free!!! I mean, free?? Really? It’s an eerie feeling to know that at this point I/ we have done what all the doctors in their wisdom have suggested. We have exhausted treatments, options, people, ourselves, surgeries… I don’t want to make it sound like I am dying tomorrow and there is no other hope. I mean to say we have reached the end of the surgery/ treatment phase of this and I am disappointed in my response of indifference. Why am I not leaping in a fit of joy at the thought of independence? It’s complicated. I am beyond thankful at the unimaginable grace we have been shown. The countless provisions God freely gave us, both through people and strength that is not of this world. My faith is stronger, and I feel compelled to dig in and continue to press on…one peanut butter and jelly at a time. I am in awe of the ways God continually shows mercy and love. Especially through this last trial. So many praises. K, our loving friend stepped in literally a few days before this last six week adventure to help us when we needed it most. People, many of you, have prayed relentlessly. Our parents drove me to Anaheim each day. AND sacrificed whatever free time they had to help me care for the kids, cook and let me do what is so desperately needed: rest. We missed ZERO treatments. I was able to be shuttled to LA free of charge with some wonderfully kind people. I am not bed bound as I had honestly feared. I could continue on and on and on.
In the same breath, I have some heavy battles that continue to wage on. I am struggling with the next set of fires I face, the aftershocks. The unknown of what is permanent. With higher doses of radiation, the odds of permanence in terms of long term side effects are greatly increased. When your brain cell account is already bankrupt, there is no wiggle room in future losses. So many of you so kindly ask how am I? I say good. I mean to say-alive. Sometimes, I am great! Then I am not. Oh wait, it is naptime. I am pretty unpredictable. There is not a whole of stability in my cognitive function, physical stamina, or ability to get anything done. Daily, mundane tasks are like putting together a 400 piece ikea dresser; WHERE are the directions!? Chad?! I am fighting through impaired cognitive function, MAJOR short term memory loss, (Dori style), muscle weakness, loss of balance, exhaustion…ask my saint husband and parents who get to deal with the fruit of these deficits;) Google isn’t what you would call a ray of sunshine in terms of hope. Losing my hair has been really hard. I wish I could say, Ah! Its just hair! If it was a short term thing, I could mean that. I have meant that. But what if it’s not? I am trusting God will give me the grace to accept it when that time comes, if He chooses that for me. Still praying for regrowth though, I am vain like that. Lord please give me strength and a good pair of stretch pants because this is hard. Not as hard as some people make it out to be, but emotionally hard. And I am not emotional, so…there you go.
To all you praying friends, please thank God for the MANY answered prayers. Thank you for praying and thinking for us and and introducing yourself to me!! In random places at that. What a sweet surprise it is to meet those of you who have followed all God is doing/ has done-I am so encouraged by all of you, your strengthened faith, and your words of love. Please continue to pray this is all used for His glory. And that I miraculously pick up some IQ points. And please pray against those side effects. That they would not be long term and I would be able to continue to improve despite the exhaustion. I have an MRI Nov 3, and a week of appts following to discuss the results of this last set of treatments, and see what my new baseline is, what they want to do next in terms of medications.
Please pray this tumor dies a fantastic death and there is no permanent brain damage. Thank you sweet friends. I leave this post clothed in immense gratitude for you all and for the endless prayers.