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Tuesday, July 21, 2015

Even Less Sugar: What's Going On?

Things have been very busy in the Maize household. I realize that some people are a bit in the dark and await an update. My apologies. (Please note: I have a TON of things to say about ALL kinds of things and just haven't been able to bring myself to write it all down. There are gaps in this story I hope to fill, but I just can't do it right now).

Since my last post(s):

We were honored to be part of a prayer service at our church, where over 200 people gathered.

The kids both went to sleep-away camp: Ezra for one week, Audrey for two.

Ian's significant inability to communicate and think clearly has lessened SUBSTANTIALLY. He can carry on a conversation just fine now. PRAISE GOD.

He has done one round of chemotherapy (1 pill, every day for 5 days, at home) and his last radiation treatment is tomorrow (Wednesday). He has handled both very well, with no substantial side effects.

Our water main developed a leak, which turned into a torrent, resulting in a torn up street and no water for a day ... but that's in the process of being repaired. (currently the sidewalk is torn up and the street is soon to join it, and we're pilfering water from the neighbor for the interim).

My (maternal) grandfather, William F. Sheraw, passed away. The funeral service was difficult but beautiful, and we were all able to attend.

Ian has returned to work, at least in the mornings, for office work and hospital visits. He is unable to drive, and so receives rides to appointments. He considers this work both a duty and a privilege, and, in his words, it makes him feel somewhat useful.

I have also returned to work, in a part-time capacity. My employer is completely flexible and I'm able to work my schedule around Ian's and the kids'.

The kids are in a lull between camps and other scheduled activities, so they are mostly clamoring to play Minecraft and have friends over.

So that's what we're doing. How ARE we?

The Kids: They are as aware of the seriousness of the situation as they can possibly be at their respective ages. They are both "seeing" people to talk about their feelings, and are slated to attend a camp specifically for children of parents with cancer in August.

The Patient: Ian is tired a lot. He probably overdoes it with the visits and the food, but he also enjoys the company and the deliciousness. He experiences "moodiness" and is quicker to become irritated -- this is a result of a multitude of factors, the most likely culprit being the steroid he takes to keep swelling at bay.

As far as cognition goes, Ian's word-finding is SO much improved from when he returned home that I'm inclined to say it's "back to normal." However HE is aware of deficits, whether they be in word-retrieval, clarity of thought, or ability to follow conversation/activity. This lack, this mental hiccuping, distresses him to varying degrees. It's subtle to the outside observer, but to him ... I don't want to speak FOR him other than to say I believe it both makes him feel "less than" and worries him at the prospect of decline in this particular area. Losing the ability to think and communicate, to someone nearly complete with a post-graduate degree, freshly hired as a pastor who has been delivering sermons ...

The Wife/Mom/Caregiver:  It depends on the day. Truly. We're not doom and gloom here, but we're not naive. This is tough stuff. Sometimes I get to pretend and play ostrich, and other times I am struck with the full weight of the situation. At this stage, I will admit to focusing on the logistical issues of long-term preparedness and countering those with the day-to-day fluff that keeps us occupied. I don't meddle too much with the "what-if's" and the "are we spending quality time?!" stuff ... at least this week.

Which brings me to next week: 
Monday is our next MRI. I don't think I can possibly overstate the importance of this scan. Unlike all past others, we already KNOW something is there. We're praying that what we've done so far has had an effect.

There could be no change.
There could be shrinkage. (It's ok - you can smirk at the Seinfeld reference)
There could be growth.

All of these potentials have their own agony. We have no clear picture of any next steps.

We covet your prayers. We appreciate your thoughtfulness, support and friendship. And we wait.

6 comments:

  1. Thanks for the update, Rachel. Forgive the ignorance of my question -- what sort of agony does a shrinking mass bring? Isn't that what we all want to be happening?

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    1. Christine, not to be melodramatic, but all treatment is non-curative. That particular agony will be "we'll do this because it's working, until it doesn't."

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  2. We wait with you. At the same time we are waiting on the Lord to renew your strength - to mount you up with wings like eagle. To run and not be weary. To walk and not faint. All of you. I love you guys!
    Love,
    Verna

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  3. And thanks for giving us the privilege of praying with you.

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  4. Just sending love from here. Thinking of you all constantly. Wish I could be there.

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