by tjs on February 28, 2009
“Find GENUINE sarcoma expertise, be relentless, put together a plan and execute it. Handle the emotional fall-out later. Denial will get you killed.” That was the standard mode of operation for Dr. Doreen Kossove, known to many simply as Dr. Dee. When someone new showed up seeking treatment advice after finding out they had cancer she attacked. If you asked for her help you better be ready. She had lots of sound advice and dished it out with a fury. She hated cancer and incompetent medical care. If she felt you weren’t taking matters into your own hands and making sure you got the proper care watch out! Many faced Madame Brimstone’s relentless push for them to do the right thing.
It’s hard to estimate how many lives she touched during her own 8 year battle with cancer. Few who came to any of the ACOR lists she was on seeking help didn’t find a ready response from Dr Dee.
As we have seen so clearly since the announcement of her passing,
Doreen was truly unique. She exemplified how an educated and engaged
patient can transform the odds of thousands of other patients by
showing them how to use information and peer support to best navigate
the healthcare system. She started as an Leiomyosarcoma patient but
very quickly she became MUCH MORE. Her information-rich website was
and remains amazing and is always the first entry to show up when you
google “leiomyosarcoma”. Right from the beginning Doreen changed the
outlook of this list and directed this community to a more
scientifically oriented group, to the benefit of countless people who
often do not understand how powerful her influence has been.
If you think this is a fitting way to remember Doreen, please help us by making a donation either online at http://www.acor.org/donate/now/drdee.html or by sending a check to ACOR, marked “Dr. Dee Memorial Site”. If you make your donation online, Alison Woodman & Doreen’s daughter will be
instantly notified.
Gilles Frydman, founder ACOR
I’m not sure how many ACOR lists Dr Dee was on but she was on every one I ever joined, dishing out advice in her special way. Sometimes so ill she was completely bed ridden. Seemingly tireless as she led countless folks down the right treatment and care path.
I found the ACOR sarcoma list shortly after being diagnosed with cancer. Dr Dee was one of several folks who immediately reached out to me and started feeding me detailed instructions on how to proceed. They guided me through the next week and a half when my diagnosis changed 4 times. First dx, DFSP (dermatofibrosarcoma protuberans) with a Fibrosarcoma component. Then, Leiomyosarcoma (LMS). The third type actually escapes me at the moment! Then, with the aid of Dr. Dee and others the best sarcoma pathologist in the country figured it out, malignant glomus (glomangiosarcoma). I also was pretty much ordered (under threat of death) to get to a sarcoma center. I went to MD Anderson Cancer Center in Houston and Moffitt Cancer Center in Tampa. Second opinions are also vital as Dr. Dee was quick to point out. That will be five years ago in a little over a month. Had I stuck with the original course recommended by my local oncologist I’m not entirely sure I’d still be alive.
CNN coverage of her death: The life and death of an Empowered Patient - CNN.com
She always ended her notes with: “Together we are more, and more effective.” Madame Brimstone is gone and we all are a little less. The world is missing a hero.
by tjs on January 15, 2009
We’re evaluating using Amazon’s EC2 (Elastic Computing Cloud) to fire off full instances of our system for both dev and QA. That involves multiple servers and databases, it’s a non trivial task. I think RightScale is a great service which we’ll probably use if we move forward but at this point during testing and discovery I decided to muck around at a lower level. RightScale provides a very nice Ruby library to access AWS services.
So I wrote a simple ruby script that tracks changes in aws assets. Stuck it in a cron job and it notifies me by e-mail whenever there’s a change on our account. [click to continue…]
by tjs on January 6, 2009
There’ll be a CloudCamp in Indianapolis on January 28th. Judging from reports from CloudCamps in other cities it’s worth attending if you’re in the area.
by tjs on November 8, 2008
The hype parade continues. Cloud computing is the answer to almost any problem we’re facing. Yes, even global warming! Cloud Ave has just posted a classic hype fluff post titled Barack Obama and Cloud Computing. It goes a bit over the top trying to show how Obama’s policy are a big plus for cloud computing. Double hype alert! Both are new and show promise but have yet to be put to the test.
All the hype reminds me of the hype Aspect oriented programming (AOP) went through climaxing around 2004. AOP hype reached it peak when Daniel Sabbah, CTO of IBM Software said when speaking about AOP, “It is vital for our survival”. Blink. Cool stuff? Yeah. Really useful in some cases? Yeah? Vital to the survival of a multibillion dollar corporation? Blink. Oh, maybe he just meant programming in general!? Blink. In the end AOP is a useful tool in some specific places, the hype is gone and IBM has moved on to other things being vital for their survival (Blue Cloud?).
The dewpoint has hit and there’s one massive fog bank rolling in. Proceed with caution.
by tjs on October 31, 2008
UITableView is probably the most used view on the iPhone. It’s flexible and the UI is ideally suited to use on the iPhone. There are lots of examples on how to add multiple items to a UITableViewCell. However, I needed to present some data in a more traditional spreadsheet style grid. The results worked well and enabled me to pack a lot of information on the screen that was very hard to follow without the vertical grid. I’ll show a very simplified version here you can use to add vertical lines to your UITableView.
[click to continue…]
by tjs on October 23, 2008
Lisa I’m going to become a vegetarian
Homer Does that mean you’re not going to eat any pork?
Lisa Yes
Homer Bacon?
Lisa Yes Dad
Homer Ham?
Lisa Dad all those meats come from the same animal
Homer Right Lisa, some wonderful, magical animal!
One of my latest cooking fads is making my own bacon. It’s very easy (especially with a good smoker) and the results are outstanding. Pork belly is pretty easy to come by, ask your local butcher and he should have some. However for some truly awesome bacon get fresh belly from Niman Ranch. Their farm raised pork is just outstanding.
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by tjs on October 21, 2008
We’ve been planning on moving to a new messaging protocol for a while. We’ve looked at a lot of different solutions but had enough issues with every proposed solution to date that we haven’t made a decision. JR Boyens pointed us to Google’s announcement Protocol Buffers: Google’s Data Interchange Format in July. Glanced at it but then it got lost in the everyday noise. Recent work on a project caused it to get more attention. I like what I see.
As part of a new offering we decided to add in our new messaging direction. We’re processing realtime voice conversations. Some of our major considerations are:
[click to continue…]
by tjs on October 15, 2008
Christine Gray has written a great article, Online cancer resources invaluable for empowering parents of sick children, on The Health Care Blog. Her story is a valuable lesson not only for parents of children diagnosed with cancer but for everyone that hears the unfortunate phrase ‘it was malignant’. We have outstanding treatment options for every type of cancer but it’s a mistake to think you’ll get it by just going to the oncologist you were referred to. You may, but it’s up to you the patient to make sure.
I quickly learned that even though I had a kind, well regarded doctor, he didn’t have the expertise to handle my case. What I needed was a team of physicians that see hundreds of cases a year of my type of cancer. A team, not a doctor. Treatment frequently covers a lot of disciplines, surgery, chemo and radiation. I eventually landed at Moffitt Cancer Center and met with a surgeon. He told me what he thought my treatment plan would be but quickly qualified “I can’t do anything until the full cancer board approves your plan.” I didn’t have to go to each type of doctor, records in hand, and hear what they thought their part of the treatment should be. I had a team, all meeting together and determining the best course of action.
Don’t be passive! Richard Bloch summed it up nicely:
Hamilton Jordan, White House Chief of Staff under President Jimmy Carter, upon being diagnosed with cancer at the age of 41, stated, “One of my closest friends is a doctor, and he came to see me one day and said, ‘You’re going to have to manage your own damn medical care.’ That shocked me. It put a sense of burden and responsibility on me that I wasn’t sure I could exercise properly. But as I saw things unfold, I saw he was right. Although it was tempting to stay at (the hospital) and be among all my friends, and the (hospital) doctors thought they could do as good a job as anybody, I realized there were many choices to be made, and I had to make them for myself.” Fighting Cancer by R. A. Bloch
You’re going to have to manage your own care but you do not need to do it alone. Use the resources Christine listed. Become a Google fiend. Find out what’s valid science and what’s quackery. Act.
