The best word to describe our household right now is fragile.
Steve's skin is fragile. So many months of Decadron plus the recent continuous use of blood thinners have thinned his skin terribly and made him much more susceptible to bruising.
Wednesday morning he suffered cuts on his backside, caused by seemingly innocuous contact with the bedside commode. I spent the rest of the day worried about too much pressure on the wound, so Steve was especially uncomfortable. He was placed in various positions with all kinds of pillows for support. None of them were ideal.
The wounds look much better today.
Steve's urinary function is fragile. (Sorry if these details are too much for some readers. It's just part of what we're dealing with.) Yesterday he had very little output. There was still significant blood in the urine.
I was worried that he had another clogged catheter, so I called hospice at 10 p.m., and a nurse was here by 11. She was able to flush the line with saline and get return right away, indicating that there was no clog.
When we woke this morning, there was still no additional urine. But then within two hours there was about 1,200 milliliters without any evidence of blood. Excellent!
And now he's gone about five hours with absolutely no output, despite plenty of fluids.
Steve's senses are fragile. His hearing is significantly reduced this week. His ability to speak is almost gone. His vision is changing for the worse.
All of our emotions are fragile.
Cooper and Katie have both been more verbal about how they're feeling. We've talked a lot about anger and sadness and how to express those emotions in healthy ways.
(Actually, Cooper screamed yesterday: "I'm not angry or sad! I'm mad! I'm mad that mean cancer cells marched right into Daddy's brain and nothing could stop them!")
But they're 8 and 4, and sometimes the anger and sadness is directed at people. Little hiccups or aggravations can prompt major meltdowns.
I'm more acutely feeling the pull of so many needs. The most difficult time of the day is early morning, when the hospice aide is here. Steve requires help from the aide and me. Cooper and Katie also need me at the same time -- for breakfast, getting dressed, moderating disagreements.
Despite our fragility, we're somehow still strong.
Steve's body may not be totally cooperating, but he's not giving up. He's still doing leg exercises and stretches. He uses his right side to type, eat, sketch, hold his e-book to read.
He's retained his wit and intelligence. (If you're one of his Facebook friends you have no doubt at least giggled by some of his updates this week.)
Cooper and Katie are going through all the emotions you'd expect of two young children affected by cancer. I am so proud of how they're (mostly) able to articulate their feelings.
They are sweet, loving children with over-sized personalities. They continue to adapt to constant changes and challenges. They are receiving support from a play therapist and from our hospice agency.
I wake up every day sincerely eager to get out of bed and take care of Steve, Cooper and Katie. (I admittedly was eager to get out this morning because my twin bed was crowded with four creatures -- me, Cooper, Katie and furry Margie. Margie slept with me all night; Cooper joined me when the storm began; Katie crowded in just before my alarm went off.)
We never feel alone thanks to the consistent help from family and friends. You all have made caring for the Damm family a group effort.