31 March 2007

Status not Quo

Took Thursday off work. Had a nice day with GH, running errands, eating lunch out, just being together, crying and laughing. It's just absurd to talk about where you want to be buried and have it be a legitimate conversation, you know?

Friday my brother- and sister-in-law arrived for the weekend. The timing was fortuitous because I was slated to work at the yard sale for my local moms of twins club. Sure, I could have gotten out of it, but I was actually really looking forward to it. It all worked out because GH basically spent all day Friday in bed. He was just exhausted and could not get up. His mind felt hazy and his body followed suit. It was scary, especially since his oncologist said that if his liver continues to fail, the main symptoms will be sleepiness, nausea, and difficulty eating, all of which he has had in spades over the past few days. He might also have pain, but so far that's not a real issue.

Today I worked at the twin sale again, leaving GH and his siblings in charge of the kids. Thank goodness the sibs were here as GH was often out of commission, although he was better today than yesterday.

I feel so sad and so angry. It's terrifying that suddenly GH's physical condition is palpably worse. I don't want to spend our time together talking about managing his family, making plans for us to get a roster of friends signed up to help us in the evenings, and taking care of chores.

I'm planning to be at work next week, but to start laying the groundwork for a leave.

Honestly, I feel like I'm an actor in someone else's life. This can't really be my life, can it?

Oddly, one of my coping mechanisms since Wednesday's appointment has been retail therapy. I abhor shopping, yet suddenly I want to spend, spend, spend. I have directed my urge to spend towards the twins. I got them sun hats at Target on Thursday, then went a little crazy at the twin sale. I found some really cute clothes for cheap, and a bunch of fun toys: a bead maze, a shape sorter, a Little Tykes ride-on/push car, a Little Tykes pizza oven, a Melissa and Doug tool box, a Fisher-Price popcorn popper push toy, and a few puzzles. The kids are thrilled. They are loving the Little Tykes car, although it's a tad big for them. I can't wait for warmer weather to put them in their new summer clothes.

My sister- and brother-in-law had to help me put the twins to bed tonight; GH wasn't up to it. My sibs-in-law were great, but the kids know the difference. Riley was so upset that I had not been the one to change him into his pjs that he sobbed for almost 10 minutes when I put him in bed. I finally had to go in and rock him for a few minutes, sing him a song, and try again. He went right down then. Poor little man. Maddie coped better, but shed a lot of tears on the changing table when GH was not there to get her ready. Sigh.

Our consult with Mr. Big Important Doctor is Wednesday, although Mr. BID is on vacation, so we're seeing one of his colleagues. I'm trying to keep the faith, but I have to tell you that I'm losing ground daily. GH's condition has so clearly declined sharply in the past few days.

I'm not ready. I'll never be ready. I don't want to share GH with anyone right now. I want him all to myself for as long as I can have him. Oh, there are so many things that I want, so many things.


Rev Dr Mom said...

Words fail, but you are all still in my thoughts and prayers.

Dorcasina said...

Oh, honey, I know that sense of unreality.

And if you don't want to spend this time "planning" the unimaginable details, then don't. We found that discussing some things was very important to us; the other stuff we just skipped. It's minute by minute. I don't want to presume to be knowing what you are going through; grief is so very individual. But I found it helpful to realize that I was not alone in the cruel twist of the universe.

GH may also be experiencing a natural "letdown" after that last appointment; he may need some days emotionally to recover from the "news" and get back to feeling like fighting...or not. Again, there isn't a template, nor is there anything "right" except to love each other. My husband really declined right after the initial hospice call, but then perked back up again as his incredibly resilient spirit processed this new news.

And I'm like you--I had not been a big shopper, but have found much more comfort in retail therapy: some type of desperate nesting. As long as you're not spending the college funds, go for it. I did mine at thrift stores, grocery outlets, and discount marts.

God I wish I could do something more than remind you that you are not alone, despite how it feels, and send continuous love and prayers your way.

I so wish I could make it all just go away, and give you the time and joy you deserve.

luolin said...

I'm thinking of you, a lot. I wish I could do more.

wakeupandsmellthecoffee said...

Can just the two of you get away for a night or a weekend? GH might end up sleeping a lot but at least there would be no distractions and you could have him just to yourself for 24 hours, just to hold him or whatever. Every moment must be so full of significance for you both right now. Best to make those moments count for everything.

Marie-Baguette said...

Thinking of you and your family. I really hope that Wednesday appointment will go well.

Rachel said...


Norah said...

thinking of you, and wishing with everyone else for a miracle.

Lisa said...

When I used to work in pediatric oncology, we used to call this awful time "the haze." I experienced it when my mother had cancer.

Take care of yourself. Do whatever works for you and your family. Be selfish if need be. Slow down. Relax as much as possible. Ask for help when you need it. Breathe.

Thinking of you everyday.

LCT said...

Here, reading, thinking of you both. And the beautiful kids. Fingers crossed for Wednesday with BID. You know where to find me if you need me. Much love.

Anonymous said...


Surreal is an understatement I'm sure...Thinking of you all, be as selfish as you need to, glad you had some help, just give a holler if I can help out in any way...you're all in my prayers.

Everything is crossed for the BID meeting.

lots of love,

Christine said...

Snick -- I just want you to have some more time with the man you love. Praying for you and thinking of you.

Yankee T said...

Sending my love, pure and simple. I have no words.

April said...

This is heartbreaking to read, I can't imagine experiencing it.

I found your blog on the CNN article (group therapy) and started reading the archives. At work. Crying at work, not helping me keep a low profile. Looking forward to reading more of your story. PS You have beautiful babies!! but you know that.