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Monday, April 11, 2016

Even Less Sugar: All Healed Up and Nowhere To Go

It's amazing, the human body.

After that impressive gash, Ian's head is down to one small stitch hiding under a scab but is otherwise healed up. No infection has appeared to plague us, so we're in the clear from the fall.

In other news, I've gone back to work, part-time. They called, kinda out of the blue, and I surprised myself by immediately responding "yes"; I guess that means I need some kind of distraction/peopling/work/thing. My boss and team are completely supportive and flexible and I couldn't ask for a better environment. While I'm out, a good friend comes to the house to look after Ian and "hold down the fort" (ie, clean the toilets). God bless her.

KIAI!

Also in the, "wow, you're actually doing that?" category ... I've begun to take karate classes. Because:

  • I took a Facebook quiz that said I should (no, seriously, this is the reason I even considered it)
  • The kids take it, too, and I'm familiar with the studio/people
  • The studio is two minutes from work, where I had decided to return only moments before taking the above "quiz"
  • I need to be doing something active... for physical AND mental health (I've gained 20 lbs since June/ I get to hit stuff)



On Sunday, Ian will be ordained as a minister in Evangelical Presbyterian Church. The ceremony and celebration will happen at our home church, where he was hired in June as an Assistant Pastor. It's been a long journey from Navy pilot to brain tumor patient to logistics manager to brain bleed patient to seminarian to (assistant) pastor to brain tumor/brain infection/blood clot/shut fail/CSF leak patient to ordained pastor ...


And what happens now?



None of us has any idea. (and really, none of YOU do, either, you just THINK you do. Keep that in mind.)


How IS Ian? Here are some facts:


  • He sleeps a LOT. I would say he's awake about three hours a day, unless he has an outing.
  • Those waking hours are spent eating, listening to books on CD, sometimes watching television with me and the kids -- not much else he's able to do.
  • He is on a monthly chemo cycle (one week on, three/four weeks off), which increases the tiredness.
  • His mobility is not great; I have noticed a slight decline in strength and balance and coordination. But we still do the stairs twice a day to bed and back.
  • His cognition is .... our biggest problem.

Would it embarrass him to for me to tell you we have pictures of clothing on his drawers, so he can 1. remember that clothing can be found in them, 2. remember where to find each item, 3. remember why he's standing half-naked in his bedroom, confused, wondering why he's cold?

That he often tries to put his pants onto his arms? That when I correct him and tell him that no, they go onto his feet, he lifts his arms for me to help put them there again? (I have to tap his foot to get him to lift it and not his hand.) 

That flushing a toilet doesn't make sense to him? (He knows something should be done, but he'll stare at the handle and call me to help him because he can't figure out how to do it.)

That he ate a cupcake with the wrapper still on

He can't dial a phone. He doesn't brush his teeth (without prompting, and even then, I need to load the brush). He doesn't care to shower (I'm in charge of when that happens). He would never remember to take his medicine (which he's been taking every morning and night for 10 years). 

When he's "in a good place" cognitively, he can carry on a conversation with only slight gaps in flow. He can listen to and understand books, television, people talking ...

But sometimes he'll try and try to answer a direction question, and nothing that comes out makes sense. 

And he's aware of that.

And it sucks.

As you can imagine, taking care of a grown man in these ways while parenting, maintaining the home, and wearing all my other hats has been exhausting and trying. This week, Ian's mom graciously agreed to take Ian to her home for a change of scenery for him and pace for me. I was burning out. I needed the respite. 

This Friday is our next MRI. We will discuss with the doctor all the regular stuff (has the tumor grown? how is he tolerating chemo? what about his decline in cognition?*). It's also possible we will be exploring alternative treatment centers, out of state. 

Please pray for us as we navigate the every-changing new normal, and make wise decisions regarding his care and our path as a family.




*All these things can cause cognitive deficit: swelling, tumor, radiation (ie, dead and continued dying tissue from radiation treatment), chemotherapy affects, shunt failure/pressure.

3 comments:

  1. Hi Rachel.....Wonderful job keeping people like me updated on his condition....there are lots of specifics here that can be prayed for. I am not at all surprised by these conditions considering what all he's been through, there's bound to be collateral damage. Will be praying for you all as I always do, and I hope that possibly the doctors will be able to advise you on ways to help him without draining yourself like crazy. Is there any hopes of treatment to try to correct some problems such as the directional issues? As I said, my prayers will keep coming and I'll be thinking of you all. Becky

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  2. Love and Prayers my friend!

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  3. Experienced this with my dad through Huntington's Disease. Now my 3 siblings are suffering from it as well. Understand your feelings. Ditto what LilliJ said

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