Wednesday, December 29, 2010

Top Twelve

A lot of bloggers are posting their favorite top ten-ish posts of the year, so I thought I'd go along and do it, too. Well, there are twelve.

First Mammogram Since Surgery The machine is hard: metal and plastic. My breasts, my body, are soft. The technician keeps telling me to relax.

Poem One day I am a person | The next day | After knowing fingers find a | Lump |I am a patient.

Spring Children run and shout| Like convicts escaped |Throw balls | Ride bikes |Grow in the sunshine

Breast MRI Fun at the Hospital "There is no graceful way to do this," admits the technician. She indicates that you should climb onto the table. "Your breasts go here, and your face goes here."Say what?

Don't chew on your mama's tefillin Two poems (not mine) about different women's experience of Judaism, juxtaposed

Incidentaloma There is a new terminology out there -- incidentalomas -- for things that are discovered accidentally during a test for something else.

High holiday wandering My earliest high holiday memory involves big white tents.

The story of a man This is the story of a man I know.

Puberty, pimples, and cups J recently turned 11, and at his yearly physical shortly after his birthday, the pediatrician opened up a discussion about puberty.

On breast cancer (a version of which was printed in our local paper) There is strong, growing scientific evidence that the cause of breast cancer is environmental, i.e. chemicals in our food, water, air, and soil.

Friends in cyberspace And sometimes, people you know only from cyberspace die.

Oy, Chanukah (a version of which was posted in the OnBeing Blog) What does it mean to be Jewish during a prolonged, public, and pervasive holiday season?

And here are some other bloggers' top posts: the Velveteen Rabbi's top 12; Scary's Mommy's top 12 (and others posted in the comments section): top White House food stories of 2010; I'll add more as I find them. Enjoy!

Tuesday, December 21, 2010

Entering data

I'm at work, entering data into an Access database. It's not very difficult, and it can be a bit soothing to enter data. I don't have to think too much. But entering this data always gives me pause. I'm entering the data that represents a child, a child who progressively became sicker and sicker, and ultimately -- always -- died at the end. Entering this data makes me feel... strange. Sad. Grateful that I have a healthy child. Sad for the families that have to go through this. Amazed and so appreciative of the folks who work in this field and do this work every day.

Even after four years, it's hard for me to talk about the study I'm working on. Improving end-of- life care in the pediatric ICU. The study is about making the end-of-life experience better for very sick kids and their families. True, this is a very small minority of kids. Most kids get sick, and get better. But some kids -- 55,000 a year in the U.S. -- don't. And most of these kids die in the PICU. So here I am.

I start out typing in very basic information. The child's date of birth. The date they entered the hospital. The day and time of their first vital signs. Often, these children are very young. Often, they enter the hospital soon after birth. These are the kids with very serious birth defects: problems with the heart, with the digestive system. Sadly, some of them never get to see the world outside the hospital. This is where you start to think about quality of life, for the child, for the parents. Does it make sense to keep them alive for a few months in the hospital, only to die a few months later? Is a few months of life worth the pain and discomfort that the baby experienced? The parents? No easy answers.

The next page has information about the diagnosis. Often I don't understand these, but sometimes I do. Kids in the PICU tend to have serious diseases. Usually chronic diseases. Cancers, genetic issues, cystic fibrosis, muscular dystrophy. Occasionally, there is something acute, like a car accident, a drowning, being hit on the head.

Next page is about the involvement of different care givers, such as social workers, chaplains, and so forth. Most of the time, there is support offered by some of these services to the child and the family. This seems like a good thing to me. After that, there is a chart that lists the different family conferences that took place. These are interesting because they tend to follow a progression: at first, the family and the doctors discuss the prognosis, and decide to continue supportive care. The next day, they consider withdrawing or withholding treatment. And finally, they decide to withdraw or withhold. One thing that I've learned from working on this project is that the acceptance of a child's death is a process. Parents need to see that everything that can be done, has been done, and if they see that and see that their child is still not improving, then they can start to consider the end.

The next pages deal with all the possible interventions that a child can have in the PICU, from differing types of feeding, hydration, medications to bring up the blood pressure, different types of mechanical ventilation, and different medications that relieve a child of pain. It's interesting to see that, again, this tends to follow a pattern. The child often receives lots of interventions at first, and as the days go by, they tend to drop off.

There is a question called "ability to communicate" and most of the time, the child in the PICU is comatose. At least they aren't aware of what is going on. Most of the time, they aren't feeling pain at all, either.

The final page describes the child's death. Who was with them, was there an autopsy, was there a decision for the child to be considered as an organ donor, did the donation actually happen? And that's it. The chart abstraction is over.

Another child has died. Another family is crushed. I exit out of the chart. And sigh.

Monday, December 20, 2010

What I don't like about winter

  1. My hands are SO DRY right now that there is actually a crack in my right thumb (and it hurts)
  2. Having to put on a scarf, long coat, and gloves every time I go anywhere
  3. Cannot find the ice scraper
  4. Have lots of gloves and mittens without mates -- for some reason, only the left ones remain
  5. It gets dark at 4 pm
  6. I'm sleepy by 7 pm
  7. It's really dark in the morning, too
  8. The first official day of winter is TOMORROW
  9. At least 3 more months of this?!?!?!
  10. Why do I live in New England anyway? Oh, yeah: the change of seasons is so beautiful...

Friday, December 10, 2010

It keeps changing

Let's review.

During the summer of 2009, my onc suggested/recommended/insisted that I switch antidepressants because there was some research that showed that the type of antidepressant I was taking might affect the functioning of the Tamoxifen, which is supposed to prevent cancer from coming back. Here's a post I wrote about that.

So I tried several of the antidepressants that were supposed to be better for women on Tamoxifen, and none of them worked. In fact, about a year ago, I was feeling pretty crappy. Here's a post I wrote at that time.

Ultimately, I got off the new antidepressant, off the ovarian suppression study, and back onto my old antidepressant (that I know works for me). Here's a link to that post.

I thought I wrote more about it on the blog, but I guess I didn't. During that time, I read a whole lot of research about the connection between Tamoxifen and something called CYP2D6, which is an enzyme in your liver. Supposedly some people metabolize Tamoxifen differently, and this can impact how well the Tamox works to prevent future cancers. Some women took this research to heart, and had the CYP2D6 test and based their decision whether to take Tamox or not on that result. My onc wasn't convinced, so I didn't have that test. That was fine with me, because I wasn't convinced either.

Then, someone looked at antidepressants, which also are affected by the CYP2D6 enzyme in the liver, and decided to look at whether women who take certain antidepressants and Tamoxifen are more likely to have a recurrence. However, reading the research, I wasn't convinced. They were using data sets from health care corporations, with records based on women filling their prescriptions.

I looked at everything I could get my hands on, and decided, based on what I read and how I felt that I had to have good quality of life, and that was more important than a possibly reduction in efficacy of the Tamox.

So today, here's some news from a large breast cancer research conference (the San Antonio Breast Cancer Symposium):
The CYP2D6 test, also called the “tamoxifen resistance” test examines a gene called 2D6, which produces the enzyme CYP2D6. This enzyme is necessary for the body to metabolize a number of drugs, including tamoxifen. Tamoxifen has to be metabolized to endoxifen in order to work. This is done in the body by enzymes. Some people have variations in these genes that result in them making less endoxifen, and there has been some data suggesting that these people don’t do as well when they take tamoxifen. This was noted at the 2007 San Antonio Breast Cancer Symposium, when researchers presented data that showed that women who inherited a certain variation of the 2D6 gene were almost twice as likely to have their breast cancer recur, even though they were more likely to complete their tamoxifen treatment.

To explore this question further, researchers took advantage of two large studies that were done to look at the benefit of tamoxifen versus an aromatase inhibitor (which is metabolized differently, and is not affected by CYP2D6). Their findings refuted the previous data, showing that the presence of common mutations in the genes that control the enzymes that metabolize tamoxifen did not have an effect on whether women were likely to have a recurrence. They also found that antidepressants that are thought to inhibit CYP2D6 actually had no effect on whether women taking tamoxifen had a recurrence. In sum, the researchers concluded that for postmenopausal patients with hormone-sensitive early breast cancer, CYP2D6 testing is not justified to determine whether to give tamoxifen. They also found that, in contrast to what has been suggested, the presence or absence of hot flashes should not be used as an indicator of whether tamoxifen is effective. (link back to original article by Dr. Susan Love)

So, as usual, I'm both relieved, and angry. Relieved because I really didn't believe the initial research that showed that the antidepressants impacted the Tamoxifen. Angry because lots of women went ahead and changed their antidepressant because of this research. Also, some women took the CYP2D6 test to see how they "metabolized" Tamoxifen and made treatment decisions based on this test. So now what do they do?

This breast cancer business is a moving target. You try to make decisions based on the latest information, but next year, it might change. Argh!

Discontented

This was the Chanukah of J's discontent (apologies to Shakespeare and to Steinbeck).

I'm not kidding. The kid really wasn't happy this year.

Here's the back-story. J received an X-Box 360 (a video game system) recently as a joint birthday/Chanukah gift from his grandma. He also purchased a bunch of games that he wanted to go along with it (sports, only sports). He really doesn't need anything else.

So for Chanukah this year, we gave him the following: a t-shirt with a cute basketball saying; note cards with a cute basketball saying (okay, I know not very kid-friendly, but he needed note cards for thank you notes); a year-long membership to X-box Live; a year-long subscription to Sports Illustrated Kids; a Needham duffle bag filled with a Nike hoody and athletic pants (he liked those gifts a lot); Celtics sweat pants; an iTunes gift card; and a photo book I'd made of this birthday party this year. I also attempted to buy him a Snuggie but I bought the wrong size and had to return it, and I attempted to buy him a Miami Heat calendar (he loves the Heat) but it didn't have the Big Three in it, so that didn't work out either.

Not so bad, right?

Wrong. Terrible.

What he wanted was: a cell phone, an HD TV for his X-Box that lives in the basement, a Kinect for his X-Box, another expensive Celtics or Heat shirt (he already has MANY)....he just "wanted something good" (spoken in very whiny, privileged tone of voice). What we gave him "wasn't good."

Also, according to J, "Chanukah this year wasn't as fun as it used to be." It wasn't exciting. Lighting the candles wasn't exciting. Singing the songs wasn't exciting. The presents weren't exciting.

Sigh.

Welcome to the real world, kid.