Battle

Jenny here.

The last few days have been long but quick. I've been pretty tired and just come home and crash. It's a strange feeling to think that less then 2 months ago he was diagnosed. What a fast, rocky, wild ride it has been. Only about 1000 + more days to go until he will be done with cancer!  I've had very few jobs for that long!

Having been in and out of daycares for my work I have always said, no matter what the place, daycare is an institution and you use it out of necessity.  No one will replace the care you can give as a family.  SNF’s are the same way…and my sweet man is only there out of necessity.  It’s a mediocre place at best, but was the only one that would accept him ( he's big and tall and now has "aggressive" added to his file) and fit some other requirements like transportation to his medical appointments.  Sigh.  What a hard decision.  I still tear up every time I leave.

There are so many reasons that I will be happy when he is through with rehab.  We've experienced some real lapses in care over the weekend that are not life and death but are definitely quality issues. His therapists seem good but the nursing staff is questionable. His speech is just hard to understand and he asks for what he needs but communication is hard and staff doesn't try too hard to help. I wish he could write, but his hands still have tremors from the steroids.

Yesterday I marched in and let the Exec Director and Nurse Manager have it. I was just so fed up. They had no idea they were dealing with a social worker…the SNF will never be home but me, along with all visitors, will make sure he is not forgotten.  I told them there would be eyes everywhere!  Consequently, when I returned last night, things had gotten done and every staff person seemed to know my name. Sometimes you've just got to cause a scene (even if your hubby kicks you out because he needs calm energy and you are just too revved up lol).  Don't mess with a woman on the edge. It won't end pretty.

If anyone is local and wants to just randomly stop in to make sure he has advocates on the ground there, give me a buzz.  It takes a village.

It's been nice that the kids are still on vacation. Each time I see my niece, Jay, with him I am swept away in emotion.  I was 6, almost 7, when my dad was first in the hospital (almost exactly the same age).  When my life changed forever.  She was very interested in the PT session and counted right along.  She challenged him to eat 10 bites of the homemade soup I brought (5 more than he would have eaten on his own).  It made me remember how much I had wanted to know at that age. But back then I had to eaves drop and guess because adults wanted to protect me. Jay isn't worried because she can ask questions if she wants and gets to see him when she wants. Ever the therapist, I have workbooks and other supplies to help us all process. But I think one day Jay and I could write a better book for kids about cancer.

There is one topic I've been avoiding lately. I have to say, in all honesty about this journey, that there are people we thought would be there for us that are MIA. There are folks who cause more stress by questioning decisions or not dealing with their own feelings in a better way.  I know it's hard to see him like this. Trust me, I'm there every day.  My entire world is upside down with no escape. Wil and I talked early on about how we knew the people that would partner with us for the long haul would rise and we would be cared for when we needed it. Those who couldn't, for whatever reason, we would try to understand their perspective and send them love from the distance they keep. So I don't make these statements as a way to out anyone, just as an honest account of what happens in relationships along the way through illness and to encourage others who might be in the same boat.

You are never alone. The company you keep during tragedy just may be unlikely partners. And that's ok.  The people, the "Jays", you need will rise up and meet you every time. Stay open to unexpected love.

We are blessed to have an army of "Jays" these days. I feel swept away when I see friends and other family kiss his head, give him foot rubs, tell him they love him. Tell him to fight.  Rearrange schedules to visit. Send cards and love. I think, how did I get so lucky to marry someone so wonderful that everyone else loves him as much as I do?  After seeing my mom care for my dad all those years I never wanted to get married and take that risk. I didn't want to ever be that vulnerable. But when Wil has his plan, there is no stopping him. And I easily and quickly fell for the man who I would always refer to as my better half. He's stubborn and loyal and practical. That's why I know he will get this done.

At one point during visitors this week, Wil turned to me and said “I am...so... overwhelmed.”  It was very clear. I asked if we needed to leave or quiet down or what was overwhelming. He said “No, I am overwhelmed…with…love.”

Wil doesn’t read the blog.  He isn’t yet reading his FB or texts.  He doesn’t have the hard evidence, in writing, in phone call conversations, etc that I get every day from all of you.  But I am telling you, he feels it all around him. When people visit, even just to watch him sleep, he feels it. He's never felt it more.

He is still very weak.  His endurance is not long.  His original PT orders are for 4 weeks of daily PT.  I am SO hoping that we can shorten that and get him home.  Food is our mission these days. I'd love to see a day where he can get in at least 1000 calories. Lately it's been under 600. This morning he says people would be proud because he worked hard to eat some oatmeal and eggs. Every bite is one bite closer to bringing him home.  And it's in large part to our army. To you.

Into battle...