We’ve shared so much through the years—the triumphs and the heartaches, the special days and the ordinary ones. In fact, I can’t imagine what my life would have been like if you hadn’t been a part of it.
And I just want to tell you that if I had it to do all over again, you’re still the one I would choose to share it all with me.
--My anniversary card from last year
Jeff and I were married 18 years ago today. I have to admit, I wasn’t sure we’d get to celebrate that, but here we are. Praise the Lord! In fact, I’ve decided to stop thinking that this is the last birthday/holiday/celebration that we’re going to have him with us. Evidently, he is a fighter.
In terms of updates, I’ve been lax to write. It’s not that I want to keep information from you, but that I don’t want to depress you with weekly updates of the latest symptoms or how nothing’s improved. I’ve been unfair—asking you to pray and then not informing you how things are going. I am sorry.
The decline has obviously been slower than predicted, but there is a definite decline. It’s not something you notice daily, but looking back over the last six months, it becomes very evident. Jeff can only see shapes and shadows now, and only in well-lit conditions. Eating is a challenge that we handle by explaining locations of food on the plate: Roast @ 6 'o’clock, peas @ 2 o’clock, roll @ 9 o’clock, etc. He does better with foods he can pick up.
Walking is difficult, not only because the disease is making him unsteady, but mostly because he cannot see where he’s going. He got a walker a couple weeks ago, and that has helped him so much. He can now move with confidence through the first level of the house. And if he does begin to stumble, the walker is supposed to help him catch his balance. Today it helped him not to trip over the kids’ shoes. (We’re still working on not dropping things in the middle of the entryway or placing things on the stairs to be carried up later. Those were bad habits before that are now quite dangerous habits.)
Probably his most significant complaints aside from the vision loss are pain and some loss of taste. Most days his pain medication does a fairly good job of keeping him comfortable, but occasionally he just can’t seem to get adequate relief. Those are really rough days. I was concerned about how summer break was going to shake out with three noisy kids and one person with a constant headache. I think we are managing okay so far. (And yes, I have thought about sending them out after breakfast and locking the door after instructing them to ring the doorbell at lunchtime. But I haven’t done it. LOL)
The loss of taste is frustrating for him, as he was a bit of a “foodie” before. Not that I am a great cook, but he did enjoy fine food and the subtleties of flavors. Some friends have shared some tasty spicy recipes that he enjoyed. Fortunately our kids actually enjoy spicy food, too, as long as it is not too hot and they are great about trying new things. Mainly, Jeff eats pickles and chocolate these days. Oh, and salad. His doctor would be pleased to know that he can taste and does eat salad.
I had mentioned hearing loss before. That doesn’t seem to be any worse, really. The radiation oncologist had told us that there might be some hearing loss due to the treatment, and since it doesn’t seem to be progressive, I tend to think that’s all that is. On Friday, I was in the kitchen and he asked “Is that the ice cream truck?” I had to completely stop what I was doing and hold my breath to hear it, but he was right. A few moments later, the ice cream truck drove past our house. So he can actually hear, but he has trouble distinguishing between two sources of noise. For instance, listening to the TV while someone is talking in the next room is frustrating. He can’t make out one over the other. Honestly, I wonder if that is more from the headache than from hearing loss. But I’m not a doctor, so that’s just my humble opinion.
In all reality, we are very blessed. I truly thought we’d be in hospice by now if he was still living. He’s still Jeff which is something he was fearful of losing, worried that the radiation or the leukemia itself would alter his personality. His speech remains only lightly affected to the point where I wonder if anyone else really noticed the slight change but me. He’s still able to hug the kids every night and tell them he loves them.
And he’s still my best friend. Still finding ways to encourage me when I’m supposed to be encouraging him.
He’s always been like that. :)