As noted on CaringBridge today, this week will not soon be forgotten. We're all happy it's over and that a new week has begun.
Starting late last Friday, Dori's condition started sliding. After a very difficult Saturday and Sunday, Dori gradually came out of the valley. Dori told me today she didn't think she was going to make it through last Saturday (severe nausea, chills, bloody phlegm, etc.). That was a "wow." I then asked her what helped her climb out of the trough, and she said, "God," and then "You and the kids." Good priorities, if you ask me.
Fortunately, she says she doesn't remember much from the last seven days. I wish I could forget it. Seeing your true love go through hell (the right term) is taxing. You feel helpless almost constantly. I've heard the following many times and said it a few ... that God has equipped our species to go through things like this. True, but it is difficult to watch what Dori is experiencing. But as one of the care partners said today while she was walking, "Good times are coming, Dori." That's what Dori said God has promised her.
The kids are doing relatively well. They are still laughing and playing, and doing well in school. I firmly believe they are watching their parents stare down fear and anxiety and trying hard to emulate our actions. They haven't seen Dori since Sunday, when Dori was in rough shape. Seeing Mom in pain made Will cry. It hurts to write that a week later. Kathryn has woken a few times just wanting to talk. I've heard the kids and Dori all talking in their sleep, and Lord knows what I'm muttering after the lights go out. It all adds up and takes its toll, and you do nothing but face it.
I am in total awe of my wife. She is a warrior. She is a leader and has shown her family and circle of influence how to respond to adversity. After Vanderbilt beat South Carolina last Saturday, the Sunday headline said, "Vandy rises to test." I thought, "That should read 'Dori' instead of 'Vandy.'" She is selfless, courageous, spirited, calm and grounded in goodness. I complement her with reassurance and the resolve to accept nothing less than victory. She deserves nothing less. Also of note, our solid marriage has never been stronger. I ask God every day to let us carry on together to the next chapter, and I know many more are asking the same.
I'm not exhausted, but I'm starting to feel it. It's that raw feeling when you haven't had enough rest or personal time. I haven't run, which has been my panacea, in more than a week. That's too bad, since the weather is perfect for some 5-6 mile runs. Duty calls.
I have to vent a little, something I haven't done much. I don't believe it's healthy to waste reserves on negative stuff. That said, I think the caregiver class we took before Dori was readmitted was irrelevant to our experience. Most of it was a rehash of what I read from the National Marrow Donor Program's handbook. There were no "real-life" examples of what you might expect or things that have hindered or hurt patients in the past ... and to what challenges or pitfalls caregivers should be alert. I won't list that here, but suffice it to say my Mom and I have shared general impressions with some staff we trust and will be delivering specifics at the appropriate time so other families can be aware and alert, if they so choose. It certainly would have helped us plan and prepare better. Quite a few organizations (and people) tend to present information through their own eyes and not their audience's (customers, patients and caregivers, etc.).
Dori is falling asleep, and I better join her.
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