No. 13

I want to play with this so badly!



They come in a million colors, or so it seems and I am positive my printer would not know what to do with it. I guess I need to think outside that box then.

What can I do with this wonderful paper shape?

They just make me so happy!

The store says it reminds them of little clouds. They also say to do something creative every day.

Does writing my work newsletter count? I think I need to do something else too.

Like No. 13: play with paper!

43 Things


Clare
said she was inspired by me but I was inspired by the site 43 Things.

Anyway, even though I was unable to free-form my list like she did, here are my 43 things.

I want to:

1. work more
2. have more fun
3. ride my cruiser regularly
4. find a cute, little house
5. play more with jaden
6. cook more
7. be more romantic again with my husband
8. go for walks holding hands with my husband
9. get in bed at 10 and read almost every night
10. drink more good wine
11. learn more about wine
12. learn to paint
13. play with paper
14. build rosina red designs website
15. register RRD with the city
16. breathe better
17. do yoga
18. have more balance
19. drink more water
20. create beautiful spaces
21. go camping
22. eat locally
23. stop yelling at my dog
24. let my tears out
25. blog more
26. learn photoshop and illustrator
27. get a new camera and printer
28. take a photography class
29. start photo-walking
30. keep in touch better
31. stop double-booking myself
32. be more thoughtful
33. i mean, i want to do a better job of outwardly expressing my internal thoughtfulness
34. feel passionate about my life
35. go to the movies
36. find more compassion for my dog
37. lower my standards and let go of perfectionism
38. be kind to myself
39. tolerate uncomfortable feelings
40. have an art studio to work in
41. use lulu.com for something
42. be in italy
43. speak italian fluently

and to break the mold:

44. learn to write a list in free form instead of all structured like I naturally do it. :)

Why I Will Enjoy the Flat Soccer Field

By ANDREW DALTON, Associated Press Writer
August 5, 2007

CARSON, Calif. (AP) -- Jake Brown didn't feel his shoes pop off.

"I was already knocked out," he said. "The last thing I remember was thinking, how do I fall?"

He didn't recall anything else until he walked off the mega ramp about 10 minutes later.

"Walking off the ramp, that was rough," he said.

At the X Games Skateboard Big Air competition Thursday night, Brown was in the lead heading into his fifth and final run when he lost control during his second trick, sailed out away from the ramp's platform and plunged about 40 feet onto his heels and then tailbone. He bruised his lung and liver, broke a wrist and a vertebra, and had his sneakers knocked off.

He finished with a silver medal for the second straight year. Bob Burnquist made the winning run right on Brown's heels.

The TV and internet video of the drop, which makes even hardened viewers flinch, has made Brown an instant celebrity.

He talked by phone from his Southern California hotel room Sunday morning, sore and a little bit groggy.

He said it started with a surge of joy.

After rolling down the 80-foot drop in, he made two full turns over the mega ramp's 70-foot gap and landed in the adjacent halfpipe, but had trouble maintaining control as he sped across its bottom and up the other wall.

"Yeah, the 720, it was the first one I've ever done over that big gap, or even the small one, so I was happy," he said. "But I was a little too far to the left for the trick I needed to do, so I started carving across the flat over the right, and I tried to carve back left, and my timing was a little too late, I got a little bit wobbly going up."

His instincts, which would help him seconds later, did him wrong at first when he shot up and away from the lip of the halfpipe and over the flat area in its middle.

"The G-forces made me squat down onto my board, my natural instinct was to stand up, and that just shot me out to the flat. So I was 40 feet up, and 30 feet out."

Brown said that as other skaters have speculated, much of the flailing fall that followed was intentional.

"I definitely was trying to think of the best way to get out of the fall," he said. "I think I did pretty good."

Big Air skaters, taking a tip from skydivers, have learned to spread themselves out and roll into an impact, and Brown did his best to do that.

"I wanted to turn around so I didn't go face first into the flat," he said. "I didn't want to just hit with one part of my body.

"Instead of landing on one part of my body I wanted to spread out the injury," he said.

Brown lay still for five minutes, then began to stir. He somehow walked away about five minutes after that.

The small, 32-year-old Australian's plunge and his incredible toughness was the talk of the X Games all weekend. He made an appearance to a huge ovation at the Home Depot Center on Saturday night between motorcycle races, and showed up to watch Sunday's Skateboard Vert competition.

"He's the greatest athlete of all time in the world," fellow Australian pro skater and friend Jason Ellis joked to ESPN's cameras Sunday. "Michael Jordan is nothing compared to Jake Brown."

But Brown was a bit dubious about his sudden celebrity.

"I'd rather be known for the stuff that I can actually do," he said. "But if that's going to help skateboarding, that's fine."

And how long would it be before he has the guts to get back on a skateboard? Months? Years?

"I was thinking just a couple of weeks," he said. "I was pretty sure if I just get some massage, some chiropractic, stretch and eat healthy, I can get back out there pretty quickly."


A Little Dream Come True

All my adult life I would watch, in curious wonder at every coffee shop I frequented, people with notebooks or laptops and think, "Ah so that's the writer's life."

Today I am finally at a coffee shop with my laptop and I have actual paid writing to do. So I guess that's a little dream come true for me.

Caveat: coffee shops are noisy and cold and have hard chairs.

Lolcats

My friend Adam told me about Lolcats awhile ago and admittedly, I didn't get it at first. But in Maui, I remembered them and showed Jeff's dad and Marsh and around page 5, the humor started to grow on me.

Now a couple few weeks later, I am here to say I officially think they're funny. Some of them truly crack me up. There is one in particular I am searching for but until I find it again, this one will join my blog.


Ironic, in a way, that the first one I am posting is not of a cat at all.
Hmm.

Have fun!

My Response to the Article

Highlights that I want to point out:

1. Zevalin is no longer being actively promoted and it was only FDA-approved in 2002. That is very discouraging and very telling. It takes so many years to get FDA approval and to know that oncologists are not using them diligently or not informed about them at all is extremely disturbing.

2. I am not the average patient and neither are the three profiled in this article! Most patients with low-grade lymphoma are seniors (although the younger set are being diagnosed more frequently, another post for another day) and they tend to see physicians as true authority figures not to be questioned. Furthermore they are not necessarily Internet-savvy and doing all the research that would fuel questioning of their oncologists.

3. Lastly I want to remind everyone that my own beloved oncologist did not recommend Bexxar for me -- she recommended traditional chemotherapeutic agents (Fludarabine and Cytoxan) for my last relapse. And even I was initally inclined to accept her proposal, so beaten down after 2.5 years of ill health. Luckily, apparently, she didn't bat an eye when I told her I wanted to go to Stanford and get Bexxar. She made it easy on me. But still. You read an article like this, and wonder, even my oncologist, who studied at Stanford and knows all about radioimmunotherapy and has one amazing success case in one patient (over 7 years post-Bexxar remission) -- even she did not reach for Bexxar for a patient with refractory low-grade lymphoma.

Now what are we going to do, what can we do to influence the system? How can we get Biogen Idec to stand behind Zevalin when doctors are hesitant to refer patients? Hello, there needs to be a better balance between the bottom line and the overall goal of patient survival. Honestly. I get so fired up about this and yet I feel so helpless. All I can do right now is post to my little corner of the web.

Actually I have one meager idea for now, on my insomniac brain and no coffee. Let's at least write the NYT and thank them for the article. It is really still a shock for me to see mainstream media coverage of my exact personal cause...not Hodgkins disease but actual low-grade non-Hodgkins lymphoma. To have radioiummunotherapy in particular addressed in that publication is a huge accomplishment.

Grateful and Lucky, Apparently -- a long post

A friend on the Stop NHL board posted this article from the NY Times. It is a five-minute read. It is a worthy investment.

July 14, 2007

Market Forces Cited in Lymphoma Drugs’ Disuse

The patients’ stories sound nearly impossible.

After an hourlong infusion, Linda Stephens, 58, has been cancer-free for seven years. Dan Wheeler, three years. Betsy de Parry, five years. Before treatment, all three had late-stage non-Hodgkin’s lymphoma, a cancer of the immune system, and a grim prognosis.

All three recovered after a single dose of Bexxar or Zevalin, both federally approved drugs for lymphoma. And all three can count themselves as lucky.

Not just because their cancers responded so well. But because they got the treatment at all.

Non-Hodgkin’s lymphoma is the fifth most common cancer in the United States, with 60,000 new cases and almost 20,000 deaths a year. But fewer than 2,000 patients received Bexxar or Zevalin last year, only about 10 percent of those who are suitable candidates for the drugs.

“Both Zevalin and Bexxar are very good products,” said Dr. Oliver W. Press, a professor at the University of Washington and chairman of the scientific advisory board of the Lymphoma Research Foundation. “It is astounding and disappointing” that they are used so little. The reasons that more patients don’t get these drugs reflect the market-driven forces that can distort medical decisions, Dr. Press and other experts on lymphoma treatment say. A result can be high costs but not necessarily the best care.

The drugs have not been clinically proven to prolong survival, compared with other therapies. But patients are more likely to respond to them than standard treatments, and trials to test whether the drugs do have a survival benefit are nearly complete.

Other, more thoroughly tested lymphoma drugs are preferred as first-line treatments. But doctors often repeatedly prescribe such drugs even after they have lost their effectiveness — and when Bexxar and Zevalin might work better.

One reason is that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar and Zevalin, which they are not paid to administer. In addition, using either drug usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors.

As a result, many doctors prescribe Bexxar and Zevalin only as a last resort, when they are unlikely to succeed because the cancer has advanced. “Oncologists use everything in their cupboard before they refer,” Dr. Press said. “At least half the patients who get referred to me have had at least 10 courses of treatment.”

While Bexxar and Zevalin help many patients, only a minority become cancer-free for many years. But clinical trials indicate that they are as good as or better than other treatments. When the drugs were approved, analysts expected they would be used widely.

But the drugs have run into an obstacle that so far has been impassable. Because they are radioactive, they are almost always administered in hospitals, not doctors’ offices. As a result, doctors are not paid by Medicare and private insurers for prescribing them, as they are when they give patients a more common treatment, chemotherapy.

In addition, most oncologists outside academic hospitals treat many different cancers and may be only vaguely familiar with the drugs, said Dr. Andrew D. Zelenetz, chief of the lymphoma service at Memorial Sloan-Kettering Cancer Center. “There are a number of barriers,” Dr. Zelenetz said.

Dr. Press and Dr. Zelenetz acknowledge that they have their own financial incentives to support the drugs. Dr. Press has been paid to speak at medical education seminars sponsored by the makers of the drugs. Dr. Zelenetz has been paid when the companies sponsor clinical trials at Memorial Sloan-Kettering. But both said the money was a small part of their total income and had not colored their views.

Some patients say they would not have received Bexxar and Zevalin if they had not demanded them. Mr. Wheeler of Kalamazoo, Mich., said he received Bexxar in April 2004 only after insisting on it when his lymphoma recurred. “I told my local oncologist, I want Bexxar, you give me a referral,” Mr. Wheeler said. “I’ve been a real pain.”

Mr. Wheeler, whose lymphoma was diagnosed in 2000 and recurred in 2003, has been cancer-free since receiving Bexxar. His cancer was growing when he received the infusion. He thinks he would be dead by now if he had not received the drug.

Ms. Stephens feels similarly. She was diagnosed with lymphoma in December 1998, and chemotherapy proved both difficult and ineffective. By August 1999, her disease was spreading. “Every lymph node in my body was involved,” she said. She received Bexxar as part of a clinical trial in January 2000 and quickly began gaining strength. She has remained in remission since, she said.

Zevalin and Bexxar are the first in a new class of drugs called radioimmunotherapies. Essentially, they deliver radioactive particles directly to cancerous cells to kill them. Idec, now part of Biogen Idec, invented Zevalin. Corixa, a Seattle company bought by GlaxoSmithKline, developed Bexxar. Both drugs are very expensive, costing about $25,000 per treatment. But one dose is usually enough. The cost of the drugs is similar to a full four-month regimen of chemotherapy and Rituxan, another lymphoma treatment.

For decades, lymphoma has been treated with chemotherapy, drugs that attack cancer cells but that can have severe side effects. Alongside chemotherapy, most patients now get Rituxan. It was discovered by Idec, the same company that found Zevalin, and is marketed in the United States by Genentech.

The Food and Drug Administration approved Rituxan in 1997. Since then, the drug has become standard treatment for newly diagnosed lymphoma patients, based on clinical trials showing that it makes chemotherapy more effective.

Because lymphoma is relatively common, and Rituxan costs $20,000 for a typical course of treatment, it is the top-selling cancer drug worldwide, with sales in 2006 of $4 billion.

Doctors agree that Rituxan is an excellent drug with only minor side effects for most patients.

Still, the few head-to-head clinical trials that have been conducted show that Bexxar and Zevalin are as effective as Rituxan, if not better.

In a study published in The Journal of Clinical Oncology in 2002, the tumors in 80 percent of patients who received chemotherapy and Zevalin shrank, compared with 56 percent who received chemotherapy and Rituxan. Of patients who received Zevalin, 30 percent went into complete remission, compared with 16 percent who got Rituxan.

Dr. Antonio J. Grillo-López, who oversaw the development of Rituxan and Zevalin as the chief medical officer at Idec, thinks Zevalin is the more potent of the two. “The early- stage studies showed that in fact Zevalin was superior,” he said. Dr. Grillo-López retired from Idec in 2001 and said he no longer had any financial interest in either drug.

When it reviewed the clinical trials for Zevalin in 2001, the F.D.A. found that “as compared to the Rituxan therapy, Zevalin was associated with a superior overall response rate.” The F.D.A. noted that another study found that 58 percent of people who had failed Rituxan treatment showed some response to Zevalin. Bexxar has shown similar results.

The F.D.A. approved Zevalin in 2002 and Bexxar in 2003, in both cases for the treatment of slow-growing lymphoma that had failed previous treatments.

When regulators approved Zevalin, Wall Street analysts projected it would reach $100 million in sales in 2003. Merrill Lynch predicted it could eventually hit $500 million in sales — about 20,000 doses a year.

But Zevalin hit roadblocks immediately. Its five-figure price caused insurers to balk. Further, its radioactivity made some oncologists worry that it might prevent them from giving other treatments later.

Prescribing Zevalin also requires oncologists to coordinate care with the hospitals that administer it. To get either Zevalin or Bexxar, patients first receive a low-radiation diagnostic dose, then imaging scans, then a high-radiation therapeutic dose, which comes a week after the first dose. Over the next weeks the patient’s red and white blood cell counts must be monitored.

The back-and-forth makes the treatment complicated to oversee, said Dr. Joseph M. Connors, a lymphoma specialist in Vancouver, British Columbia. “The doctors looking after people tend to turn to tools that they themselves know how to use and are familiar with,” he said.

For most oncologists, infusions of chemotherapy, Rituxan and other drugs are still their primary source of income. Even so, oncologists might have felt bound to use Bexxar and Zevalin if the drugs had been proven to extend survival over older treatments, Dr. Connors said. While preapproval trials showed that the drugs shrank tumors more frequently than Rituxan and suggested patients would survive longer, the test groups were too small to prove it.

Dr. Connors said that Idec and Corixa should have designed their clinical trials to prove — not just suggest — that the drugs increased survival.

Two clinical trials meant to answer that question are under way, but their results have not been reported. Until they are, doctors will be reluctant to use Bexxar and Zevalin, Dr. Connors said. For now, the drugs remain niche products. Biogen Idec reported worldwide sales of $18 million for Zevalin last year. That was about 1,000 doses of Zevalin used commercially. Dr. Press reported that GlaxoSmithKline had sold about 600 doses of Bexxar last year.

Advocates for the drugs worry the companies may stop making them. Biogen Idec said in October that it might shed Zevalin. Although the company continues to manufacture the drug, it no longer actively promotes it. A spokeswoman for Biogen Idec said the company planned to keep making Zevalin and continued to offer technical support to doctors using it. GlaxoSmithKline said it expected to keep making Bexxar.

Patients who have benefited from Bexxar and Zevalin say they cannot understand why the drugs are not more widely used.

Ms. de Parry received Zevalin in 2002, when she was 52. She had already failed chemotherapy and Rituxan. But she responded quickly to the injection and has remained cancer-free. “It’s not that I believe that radioimmunotherapy is right for everybody,” she said. “I just think that patients, all patients, should know their options.”

Moody Blue

Okay I think 99.9% of people would agree that the Monday after a vacation sucks big fat ass. You feel jolted by the time, the to-dos and the boring familiarity of everything. Let me just say it -- laundry is not nearly as entertaining at home as it is in a resort where a pina colada is a few steps away.

Oh Maui, how I miss your blue skies, warm winds and aloha spirit. I left a 737-size container of tears in your waters on Saturday. I cannot even speak yet of my heartbreak over the other Js. My only consolation is my dear Craigslisting husband found a rental on Cordilleras last night. That is promising!

Here is my little surfer boy telling me to hang loose brudda:


I wish I could dude, I wish I could.