Tuesday, September 29, 2009

Yom Kippur rant

..on Rosh Hashanah, it will be written
and on Yom Kippur, it will be sealed..


I hate Yom Kippur.

There...I said it.

Sitting far, far, far back in the synagogue yesterday (actually I was technically sitting in the social hall that is attached to the synagogue), barely able to see what was going on on the bimah, feeling hot and confined and uninspired, I realized once again: Yom Kippur just doesn't do it for me.

As I listened to the long list of communal sins, and to the rabbi speak about how we have all sinned this year, and how we need to think about the year that passed, and pledge to do better in the next year, all I could think about is that this year has been one of the most difficult of my life, and that while I was in no way perfect, the main thing that happened to me was entirely out of my control. And I highly doubt that G-d pointed His/Her finger at me and said: "thou shalt have breast cancer." I just don't believe that it works that way.

The themes and images of Yom Kippur don't work for me. First of all, I can't fast. I have tried for many years, but it makes me physically sick. I simply can't do it. So one of the main things that you are supposed to do on YK is out of my reach. Secondly, the thought of G-d sitting somewhere writing in a book that says what will happen this coming year, and the thought that praying on Yom Kippur can somehow change what it says...that idea doesn't work for me. I simply don't believe it.

Usually, I am able to gloss over my disbelief, and just go along with the program. But this year, I wasn't able to.

Add an energetic and "bored" 10-year-old boy to the mix, and you have a perfect storm for a pretty awful day.

P.S. I took a quick look out there on the internets, and apparently I'm not the only one who feels this way. Although there are others who had a good Yom Kippur experience this year. So it just goes to show you...there is always next year.

Friday, September 25, 2009

Save the boobs

You must read this article from Broadsheet. Amazing...
You've seen this ad a million times before: There's a massive pool party going on, but one poor, timid dude is floating, alone and forlorn, on an inflatable raft. Suddenly, a bikini-clad hot chick makes a grand entrance, her ample breasts jiggling with every step she takes. Everyone -- men, women, a perplexing group of guys in sailor costumes who seem to fit a particularly offensive gay stereotype -- pause, mid-conversation, to gawk as she passes. The words "You know you like them" flash across the screen. Finally, the girl stops in front of the lonely guy, leans over, and shakes her boobs in his general direction. "Now," we learn, "it's time to save them."
I'm sure this agency thought it was very clever creating this ad, but it's just wrong on so many levels...

Tuesday, September 22, 2009

You're only as old as you feel

As I walked into J's school last week to pick him up, I was followed by another mom who'd arrived at school at the same time. A third mother, who I know only vaguely, approached both of us, and complained: "Today I turned 45, and I'm not feeling very good about it!"

The other mom and I shrugged.

"No sympathy here. I'm 48," I replied.

"Sorry, I'm almost 60," said the other mom.

The 45-year-old mom looked stunned. She did not know what to say. I was feeling a little stunned myself.

I always thought I was one of the oldest fourth grade parents. Imagine having to parent J at 10 as a 60-year-old? Can't even imagine....

Monday, September 21, 2009

Pink

October is Breast Cancer Awareness Month, and already things are starting to turn pink. And not in a good way.

I just walked into the communal kitchen at work, and was shocked to see that the caps of all the large bottles of water (the kind for the water cooler) are PINK. Turns out there is some kind of promotion between Belmont Springs water and Komen. If you start a new bottled water account, Belmont Springs will given Komen some money.

Sigh. Just what I wanted to think about about at work. Breast Cancer.

It's time to Think Before You Pink once again...

Sunday, September 20, 2009

Scenes from Rosh Hashanah

As we were about to begin the Malchuyot section of the Musaf today, the Rabbi wisely (I thought) decided to stop the service for a few moments and discuss how difficult it is for us 21st century folks to understand all these references to G-d as King. We don't have a sense of appreciation for the role of king as someone several thousand years ago might have had, or even several hundred years ago. He encouraged us to try to find something we could connect with in the idea of G-d as King. Why I'm not really able to connect with this concept, I was pleasantly surprised that he even brought it up at all. He's a good guy.

* * * *

The cantor does a great job of making the melodies go along with and/or contrast with the meaning of the prayers. When he sings of the shofar, you can hear the shofar in his voice. When he sings of a small voice, his voice get small. When he speaks of the majesty of G-d (back to that king thing again...) his voice is majestic. He is also a good guy.

* * * *

Yesterday, the Rabbi began his serman with a very potent image: an anima-troic fish. We happen to have this very fish (I was just reminded that it's actually called Big Mouth Billy Bass), and J played with it quite a bit for many years when he was younger. This is the fish -- if you've never seen one -- that looks like a fish mounted on the wall, but if you move near it, it plays either "take me to the river, drop me in the water" or "don't worry, be happy."

In any event, the Rabbi actually invited the Cantor to join him on the bimah, and the two of them sang a few choruses of Don't Worry, Be Happy. It's an image I won't soon forget!

The content of his sermon was also good: it was how you can't expect to be happy every moment, but you can expect to be happy. I thought this was a good message.

* * * *

It didn't seem quite as crowded this year as some years, but it still felt like a lot of people. And then there were the characters. There was the man that shushes everyone out in the foyer each year. The head usher who explains in explicit detail how to do an ark opening. The Hebrew school principal chastising the kids in services. There were adults talking, little kids running around and crying, teen girls in very short skirts... It was another Rosh Hashanah.

Friday, September 18, 2009

Thursday, September 17, 2009

Happy RH

Been trying to find a good Rosh Hashanah video for this year... this one is very cute...I think it's the same woman from the Passover video!


And this one is so cute I had to include it as well! Woo hoo Katy Perry!

Tuesday, September 15, 2009

Keep Change In Your Pockets

Last Saturday evening, my temple had a creative Selichot service. In addition to beautiful instrumentals and more traditional prayers, there were some amazing poems. Here is one of them:

Keep Change In Your Pockets
Danny Maseng (c) 2000

So listen, so listen - keep change in your pockets at all times!
Keep change for the beggar, the bus, for the train
Keep a spot, keep a room, keep a window wide open
Keep a cool change of clothes for the moment of moments!
Keep the fire in your soul
Keep remembering
Keep reminding yourself - Keep a stone for the journey
Keep the face you've been longing for etched in your heart
Keep the gleam in your eyes
Keep the pillar of fire to guide you by night
Keep the pillar of vapor to cool you by day
Keep on looking for signs, for a path, for an opening
Keep your hopes, keep collecting your dreams
Keep the palms of your hands outstretched like a beggar
Keep the sound of the whispered small daughter of voice
Keep the glow of her face
Keep on following towards
Keep the passion unbroken
Keep the yearning unending
Keep it deep in your bones
Bear the pain, be a fool
Keep believing
Keep on marching ahead to that place where you learn what simplicity
is
What commitment is for
Why the eyes were created
Why the soul is transparent
Why there's no greater gift
In this wondrous world
Than to suffer a heart filled with love for no reason

Why there's nothing as lonely
Why there's no greater journey
There is no greater joy
Keep some change in your pocket
Some change for that moment
Just enough for that moment of moments
When we're all in the moment
When we're finally all in the place at the time in the grace
Face to face with the one
And you wouldn't be wanting to find yourself
Stuck, by the side of the road with no change
With your pockets embarrassed and empty
And your heart so hollow so close to the end
Having traveled so far
So listen -
Keep change in your pockets at all times!


Dirty Dancing

I will always love this scene from the film Dirty Dancing. Rest in peace, Patrick Swayze. Yet another person taken from us too soon, from cancer.

Monday, September 14, 2009

No buffer

Normally, I feel pretty good. People describe me as "calm" and "even-tempered." I can handle things.

Right now, about 50 percent of the time (60? 75 percent?) I feel like I'm going to scream, cry, or punch a wall. This is not good.

The way I've been describing it to people is that when the meds are working well, I feel like there is a layer between me and the world. A buffer. A membrane. It keeps me from reacting harshly to every little thing. But right now: there is no buffer. And it's not pretty.

What's somewhat comforting (although somewhat not) is that women on the breast cancer discussion boards describe feeling this way just from the Tamoxifen. And I also have the triptorelin and the Celexa to contend with. Jeez....

Comments

I was speaking to one of my loyal readers this weekend, and I wanted to explain to everyone how to post comments on the blog. Comments are really the only way I know what you are thinking out there in cyberspace!

What you do is, at the end of each post, there is a place that says "0 Comments" or "1 Comments" or "2 Comments". If you click on that link, it will bring up a little box that allows you to comment! You can just do it anonymously, or you can put in a pseudonym. Or even your real name. It's up to you.

Also, the other bit of news is that I registered my domain (or rather, rented it for a year) so now you can easily get to my blog at http://www.motherthoughts.com instead of http://adenacb.blogspot.com. The old way will still get you there, but the new way is easier to remember.

That's it for housekeeping details. Back to work!

Thursday, September 10, 2009

I can't do it all

Sometimes, I just need to give myself a break. I forget that I am still a cancer patient. I forget that this has been a stressful year, and I'm not 100 percent. I keep trying to act like everything is normal.

But it isn't.

Today, I went to my monthly appointment at BIDMC Oncology for my study shot. This is the shot that suppresses my ovaries, and is supposed to help prevent recurrence of my breast cancer. The people who work there are uncommonly nice. In spite of the fact that everyone there is dealing with or treating someone with cancer, everyone is quite cheerful. It's kind of amazing.

My study nurse, Ann, who gives me my monthly shot, is as sweet as can be. She always seems happy to see me, gives me her full attention, and is just lovely. This time, she asked me how I was, and I started to cry. It's the first time that I've seen her that I really haven't felt good.

So the consensus of Ann and the research coordinator and the oncologist is that it's pretty normal to be feeling lousy (hot flashes, trouble sleeping, etc.) due to both the Tamoxifen and the triptorelin, and with the new anti-depressant in the mix, it's very likely. Somehow that helps, to know I'm not the first to be feeling lousy with all this. Also, they have some suggestions for medication tweaking. And they suggested some psychological support as well. Which is probably a good idea.

So I'm not going into work today. I just can't do it all. I need a break. I will try again tomorrow. But today, I'm taking a few hours for me.

Thursday, September 03, 2009

Frustration with the IRB

The next phase of the study I’m working on involves six hospital’s pediatric ICUs. Two of the hospitals are located on the West Coast; three are in the Midwest, and one is on the East Coast. I’ve been wrangling with these sites, and trying to get the local staff to submit the IRB (human subjects protections) applications, for literally nine months or more.

Each site received the same IRB application. We have received six different responses from the various IRBs and/or administrators. There has got to be a better way.

What’s amazing to me is that when this grant was written, about five years ago, all these hospitals agreed to participate. Now that it’s time to actually do something, they are very slow to get started; slow to hire someone in the position of local research coordinator; slow to get their contracts going; they are even slow to bill so they can receive money that they are owed!

Two of the sites have actually questioned the protocol altogether. They are worried that the surveys we have developed will “incite” parents to sue the hospitals. They are afraid that thinking about the care that was given to children who died is “too risky” for their clinicians. This is a very, very sad state of affairs.

Two of the sites approved the application with minimal fuss. And currently, two of the sites are working through the IRB comments and changes. So nine months worth of work, and all I have to show for it is possibly four sites that will move ahead with this part of the study. If all goes well. It’s very discouraging.

The procedure we are asking the sites to undertake is the following: each time there is a death on the pediatric ICU (which typically takes place about once a week in an average sized PICU), surveys about the care given to the child and family are handed out to the most-involved clinicians in the case, and some information is taken from the child’s medical record about the care the child was given. Then, three months later, the parents are contacted to fill out a similar survey. That’s it. That’s the study. We aren’t giving anyone a drug. We aren’t doing anything physical to anyone. We are handing out surveys and collecting some medical record data. Period.

You would not believe the hoops we need to jump through to get this procedure approved. We need a waiver for this and a waiver for that. A waiver to look at the medical record to get the parent’s contact info. A waiver to collect data from the deceased child’s record. We want to avoid bothering the parents about the medical record, and we need a waiver for that.

A lot of the trouble has to do with HIPAA, which really shouldn’t have to do with research, anyway. The human subjects in this study, pardon my French, are dead. They don’t have rights; they don’t need rights. We are trying to improve end-of-life care. For children. And you’d think we were trying to do something bad, the way these sites are responding.

The IRBs have really over-stepped their bounds. They are supposed to protect human subjects. In this study, the actual human subjects, as I mentioned, are already dead. We are asking people who helped care for the human subjects for their opinions about the care, and also the parents of the human subjects. We are trying to document and improve care. What we are doing is a good thing.

But there is such a fear of death – especially children’s deaths – that the IRBs seem paralyzed by our requests. They are afraid that parents will sue. They can’t see that parents really want to improve the care. Parent want to remember their child in a positive way: they don’t want to sue. They want to help.

And I’m left here, frustrated and angry. Angry at the IRBs who respond in such a disrespectful and belittling manner. Angry at the IRBs, each of which interpret the federal regulations differently, making each application an exercise in futility. Angry at the lawyers who don’t trust parents to complete a survey without suing the hospital.

Angry. And sad.

Wednesday, September 02, 2009

Green Tomato Soup

We were at the very cool farmer's market in Charlottesville on our family vacation, and a local restaurant was handing out samples and cards of this recipe. I tried it last night at home. Yummy.

1 T olive oil
1 T sweet butter
1 cup onion peeled and chopped
½ cup carrots diced
½ cup celery chopped

2 cloves garlic chopped
1 granny smith apple chopped
3 cups green tomatoes, chopped
1 cup white wine
½ t nutmeg
½ t cinnamon
½ t white pepper

6 C vegetable stock

2 C heavy cream (I used some milk and some half-and-half)

1. In a large saucepan, heat the oil and butter. Add the onion, carrots, and celery and sauté 5 minutes over medium low heat.
2. Add garlic, apple, green tomato. Then add wine and spices. Sauté for 3 minutes.
3. Add stock. Stir well and bring to low simmer for 30 minutes.
4. Turn heat down and let sit for 20 minutes to cool, then puree using a hand blender.
5. Add the cream. Reheat but do not boil the soup before serving.

Serves 6 (I cut everything down by about half. Served 2.)

P.S. The NYTimes is thinking about green tomatoes as well!

Tuesday, September 01, 2009

Vacation: the good, the bad, and the ugly

Just got back from family vacation in Virginia this Sunday. So glad to be home. We were there for 7 days, and I swear it felt like a month.

The good: Williamsburg is really amazing. It is actually a town that is very much as it would have been in 1776. We all loved how the people (dressed in full colonial garb) stayed in character, and you could interact with them, ask them questions about Colonial life, etc. There were skits going on throughout the day that told pieces of different stories about the Revolution, and about Colonial life.


We also loved Monticello, the home of Thomas Jefferson. It was beautiful, and fascinating. Jefferson was such an interesting person, inventing all kinds of things (and not just the Declaration of Independence!).

The bad: It was HOT in Virginia. REALLY, REALLY hot. The kind of hot that I cannot stand. Each day in Williamsburg, we would merrily set out from the hotel, and head to the town. After a few hours, we literally could not stand the heat anymore, and had to retreat to a restaurant (thank G-d for Aromas), or back to the hotel. We spent a LOT of time in the hotel pool. Then we would venture out again.

The ugly: J developed new and annoying habits this past week. He constantly sang a very annoying song (from WWE), pulled on my arm, disagreed, jumped, cajoled, refused, yelled, screamed... it was amazing. It was quite miserable being with him. I don't really understand it. I know that we were out of our routine. I know that we probably spent far too much time in the hotel room. I know he was bored part of the time. I know he didn't have any friends around. But...his behavior was really terrible.

In spite of that...here is a great photo of the three of us.


And thus ends another vacation....