Monday, April 8, 2013

'Tis so sweet

Well, I don't really have a whole lot to say, but wanted to check in and say hi and let you all know how we're doing. We are back in Ohio after a week in beautiful sunny Cabo, Mexico. I mean, really. We were spoiled by the gift of using a friends' home down there, and sunshine is so good for the soul. We all came home nice and peely-crispy, just as it should be after spring break. While we were there, we realized that it was the first time that just the six of us spent an entire week together. No meetings, doctor appointments, visitors, etc.

(Okay, I do NOT in any way equate the joy of having visitors -especially our great family and friends - with the drudgery and misery of going to the doctor, but it was just that cancer has caused a lot of ins and outs in our home. So, to hang out all day every day with just each other was a rare treat. And, honestly, it would not have been nearly as enjoyable if we'd tried to pull it off in our own house. As it was, there were some moments when there was near bloodshed.)

So, do you want the medical update? I find it ironic that my treatment process is ending in much the same way it began - with us navigating a confusing decision that probably has no right or wrong and has to be made on very little evidence, data or concrete opinion from a doctor.

The good news is that my last MRI was still stable. (Ben probably told you that already). So, standard treatment goes like this: surgery (check), radiation (check), temodar (oral chemo) for six to twelve months. Wait wait wait with lots of MRIs. When the tumor comes back you start the cycle again with some adjustments. So, I've been taking temodar five days a month for five months. I start the sixth cycle tonight. That should be the end, right? Probably, maybe, I guess if we want it to be. Huh? No kidding.

Scientific research basically shows that patients with six months of chemo have better outcomes than patients with zero months of chemo. There has been no testing done to determine if prolonging the treatment improves the outcomes. So, "most patients" take 9-12 months. So, we can do that if we want.

Well who really wants to take pills that knock you out of living life for half the month every month? But who wants to stop taking pills that could keep you living life for more months? 

I THINK this will probably be the end of treatment for me. Neither Ben nor I (Ben or me? Ben or I? Why can't I remember 9th grade grammar anymore? Brain tumor? Mrs. Heath? Help!) are interested in prolonging something that isn't necessarily helpful. But we'll get through this week and see how it affects me and revisit the situation later.

Does this remind anyone of a year ago when we had to decide if we were going to treat my cancer or wait on the baby? With virtually no scientific data on whether or not radiation would harm Annie in utero? Just a lot of "we thinks," and "anything's possibles." 

I love looking at the future through the lens of how I know the story ends - there will be no sickness or sorrow or pain. I also love looking at the future through the lens of how I know it's gone so far - Jesus is so trustworthy. Right now I'm memorizing Philippians. (Which, if you know me well, is a little weird, since Paul kinda rubs me the wrong way. It's fine - we'll work it out in heaven.) Anyways, Philippians 1 has my new favorite gem of a phrase:

"It is my eager expectation and hope..."

Eager expectation and hope. I don't know what will happen but I know that I am eagerly expectant and hopeful. And if Paul can be that way in prison, I can be that way while I down 340 mgs of temozolomide. 

And anyways, I'm still scraping a sunburn off my nose AND my windows are open AND we just celebrated Easter (at a Spanish catholic mass), so it's SPRING. What better season for eager expectation and hope?

'Tis so sweet to trust in Jesus
Just to take him at his word
Just to rest upon His promise
Just to know "Thus sayeth the Lord."
Jesus, Jesus how I trust Him
How I've proved Him o'er and o'er.
Jesus, Jesus, Precious Jesus
Oh for grace to trust Him more!


  1. Sus, I love you, I love your humor, and I love how you always draw us to Jesus!