BATMOM

Fair Game

I realized yesterday that I had neglected to write for 2 days! My "little" sister Juliet is in town, and we have been hitting the sites.

We received word from the doctor that my raised liver enzymes do not seem to come from the Irinotecan (the chemo). It may be my antibiotics. I'm off them now and get tested again on Friday. If all is well, I start chemo next Tuesday. Yippee! No... really... still having this chemo as an option is good.

Juliet and I have been having a great time catching up. It's a treat to have her here, though it makes me miss my whole family as I get news of them. The kids are poised to jump on her and wake her up, but we've held them off as of now. This will not last for long and soon she will be attacked!
All family is fair game!

Nagging

Ho hum. Ho hum. Ho hum. 

I suspect I would not get the mother-of-the-year award today. I tried, and I was trying. Am I always nagging? I'm hoping it's the age and that by 2 years, 9 months, 26 days (tomorrow), Adeline will grow out of this stage. She will suddenly want to put on only one layer of clothes (or clothes at all) and will allow us to put on any pajamas we can find. 

Or that miraculously, tomorrow, Cole and George stop long enough to listen and then actually put their shoes on and not go out in the rain in only their socks. While I'm at it, they'll stay in their seats (and sit, not stand) at dinner and not scream above each other to be heard. They'll wash their hands before eating before I send them from the table to wash them. They'll put their own toys back and actually finish the 25 puzzles they pull down and dump in 2 minutes. 

Oh, wait, yeah, they are 2, 4, and 5... something I have to remind myself. But still... socks in the rain? I see nagging in my future.

25 cent frog

Well, I did make it downstairs for "office hours." I pulled up my word document, read a random line and then closed it. I didn't have time to do much more. 

Cole and Adeline were home today. A neighbor needed company. And I was not in the mental space to be creative. The Supreme Court decision regarding campaign finance (unlimited corporate funding) depressed me. All the work in small contributions we gathered for Obama in this new context would mean nothing. The decision, by all I've read, pretty much wipes out the individual voters' say. Great. I'm hating politics these days. 

Adeline, Cole, and I went to Urban Ore, a salvage yard, on our errands. I thought they'd like it because it's full of weird stuff and no one's fussy about anything being fragile. I go there on occasions looking for a doll house that I can restore for Adeline's birthday. The kids had a blast hugging manikins (Cole), rescuing stuffed frogs (Adeline), spinning in chairs (both), and finding gorgeous green 19th century bed posts with Raphael-inspired angels hand painted on their base (me). They were leaning against a carved fish bench which gave me pause, but they were super cool. An employee walked by and told me they were over $1000. Ah well. 

We spent $1.10 on a frog, a crab, and 2 children's books. Adeline's calling her 25 cent frog Itchy (the name of her frog we left in France) and told me that the real Itchy will come home when Clotilde finds him. 

Funny

Adeline is funny. She is purposely funny, but being two she's often accidentally so (obviously).

We have the CD of Spring Awakening and Adeline insists on the butterfly song. She sings along with it until she sees you notice. Tom caught her today. She sang, more or less, 

Awful sweet to be a little butterfly

just winging over things

and nothing deep inside..

She saw Tom watching her in the rearview mirror and stopped singing, "The butterfly comes back after Moritz Stiefle." She perfectly pronounced the German last name. There is a character named Moritz Stiefle in Spring Awakening and his name is said by a fellow character in the middle of the song before we get back to the "little butterfly."

Tonight when I was negotiating two stories (down from 3, up from 1) and 3 short songs (up from 2 songs and down from 3 long ones... I had to add the "short" to maintain some sense of authority, she grabbed me around the neck tightly. She does this. She gets me in a headlock and won't let me leave. I laughed. This is a strong person (in more ways than one). She laughed, too. And then demanded a different third song (after I had almost finished the short one I chose). She's smart, too.

Written Out

I had my blood draw today, but have not yet found out what the results are. I hope to have a plan soon because the limbo is difficult. 

The book is coming along. I really like my windowless, basement office. There are no distractions (sun, birds, nature) and I feel safe there. 

I think I'm all written out today. Good night. 

What's wrong?

We had a family dinner out tonight to celebrate George Hill's birthday (Tom's dad). And now we're in bed, reading about the Massachusetts election for Ted Kennedy's seat that will kill health care (thank you to the out of state funders once again). What poetic irony. I shouldn't read anything political at night. I get too upset and can't sleep. Goodbye reform of pre-existing conditions. Good bye. I'm sure these jerks are right... that people don't really need their health and that Sarah Palin would make a better president. I'm sick to my stomach.

My sister Juliet comes from Australia on Saturday. There. That's something to make me smile and stop thinking about the demise of my country. She won a business award to come and learn green business techniques in Portland and is stopping to see us for a week. She's never met Adeline! 

I am going to lie down and breath deeply and try to be in the present moment. My blood test is in the morning. It will tell us about my liver enzyme levels and my docs will determine my next course of action. more chemo, different chemo, no chemo...

A good friend has been diagnosed with colon cancer. She has been going through a lot of major personal hurdles and has two kids. She has yet to have the CT scan and doesn't know the staging yet. I'm crossing my fingers (as if that helps). 

What is going on in our world? Was it always this hard for the grown-ups and we kids were blissfully unaware? 

 

Cookies and Ice Cream

I wrote for many hours today and feel that my book is really taking shape. It was a shock to be able to get so much done after a terrible night. We got to sleep late. Adeline was up crying and then Cole was up. Cole asked sweetly to come to our bed, and because he rarely asks and he's been fragile this week, I let him. As a result, he demanded my water, my pillow and my space. He was cute though.

I am trying to take this chemo break as a cancer break, but instead I was up most of the night worrying. I have an enlarged lymph node or 2 on my neck. It makes no sense that it would be related, but I felt it all night long and worried. When I'm in chemo, I get through it but when I'm on a break, I worry. Urgh. At least my thoughts are coherent enough to write now. I am putting the time to good use despite the worrying.

Tomorrow Cole is having a much needed day off from school and going to Grandma's. I wish I had a Grandmother's house to which I could go and play hooky. Cookies and ice cream make any worry go away at least for a moment.

Horizontal

Tom told Cole a story tonight and Cole said, "I don't want it to be a short story like that" and he drew an invisible horizontal line across Tom's forehead. "I want a story that is this long" and drew another horizontal line from Tom's ear, along his forehead to his other ear." Tom tried to go with it and suggested a vertical story. This upset Cole and he repeated the longer horizontal line crying, "No! A story like this!"

Meanwhile in George's room we were "doing talking." It's what we do after telling stories to George in bed. George winds down and eventually gets to something that has been bothering or confusing him. Tom is much more patient with this than I am. I am too busy panicking about how late it is and how late we'll be for school in the morning. Tom and George have even developed a schedule of Fiction and Nonfiction. Wednesday is a "make-up" day. 

George told me that when he doesn't want to play at recess, he tells stories, "the way things should be." I asked him to tell me one. "No," he said. "You'd just say, 'ah so sweet.'" 

Wow. My kids are growing up and developing their own ideas and expressing themselves in their own ways... and I don't always know what the heck they're saying... and maybe I then say, "ah, so sweet."

I told George I would just write down his playground stories (he wants to record them) without commenting or judging. I will write them down and then hand them to him. "Do you want to do that?" "Yes," George said. "I want to do that."

Procrastinate

I procrastinated this morning. I mean who rushes to chemo? I was nervous again and not feeling right. I had to keep myself from falling asleep in the strip mall of waiting room chairs. 

The nurse I had was new to me, but acted confidant. She instantly redecorated when she whisked me in. The wheely table, used for unwrapping all of the sterilized tools used to poke me, was moved to the other side of the 4 square foot cubicle, and she was very thorough in her knowledge about the lidocaine cream, which is used to numb the port site. Unfortunately she overthought the access, and it hurt a little. She slowed down and doubted, which is death to easy and painless port access. Now I had some knowledge that I could impart, but I was too shaky to give it. 

Mom was with me for the poke, but had to leave for her support group. Tom was coming to stay with me and bring lunch. I actually eat during this chemo cycle. While I was in between caregivers, the doctor came to tell me I could not have chemo today. My liver enzymes were much too elevated. He thinks I may be having a very rare reaction to Irinotecan. I go back in next week for more blood tests. He'll consult with my UCSF doctor, but it may be that this chemo doesn't work for me. I don't like to see options go out of the window. 

I came home at noon, fell asleep, and woke up at 5:27PM. I'm nauseated and still feel funny. Didn't I just avoid chemotherapy? It may be stress. I'm stressed. We live a life full of low level stress. I am patiently waiting to hear: "It's gone! Go forth and live and enjoy. No need to worry." I should move on from that. The doctors may say it's gone, but they will never tell me not to worry.

Doing

My eyes are still bugging out from too much screen time. I had a work day of reorganizing paragraphs. It was useful, but not particularly rewarding in the revelation kind of way.

Tomorrow is chemo. It's that annoying part-time job I have. The job in which my creative self does not thrive, and to which the route to work scares me. 

I've found a possible solution though. There's a creative "business" that I am starting which requires organizational hours. So during tomorrow's chemo I plan to organize and prepare. 

Every chemo cycle, I become the entrepreneur. I have a thousand ideas for what might work on any given topic. Farmtable for instance. A restaurant that grows their goods in the backyard and has service people in overalls and checked shirts. People sit at a big common farm table and eat together. Good, hunh? Hunh? Tom is patient with me. At first he took all of my ideas seriously, but now he filters through them. "We are not going to start a restaurant." I didn't want to. I just thought it was a good idea.

Apparently the more scared I get, the more ideas I produce... As if thinking and proposing is a way to escape death or at least fear. 

Redecorating the dining room is in the same category. And today I moved into Stage Two of Dining Room Decor... I began to execute it. What does that mean? I am no longer musing, but doing. Oh no.