livingcured

From the Lance Armstrong Foundation:

While the cancer community has united around requesting a 6.7% increase for the National Cancer Institute (NCI), and experts say at least a 3.7% increase is necessary to keep pace with medical inflation, the initial draft of the House appropriations bill includes less than a third of that amount, or 1.5%. The request for the National Institutes of Health (NIH), which includes NCI, is currently only 1.9% over last year's level.

Click here to send a message to your federal represenatives.

This cracked me up.

From a book I just started reading:

"The most obvious danger of disease is that you will continue over the threshold and die. This danger is paramount, and at some time it will be unavoidable. The danger you can avoid is that of becoming attached to illness, using it to withdraw from encountering yourself and others."

"A little fear is all right. It is all right to know that in a month I could be lying in a hospital bed asking myself how I spent today. Holding onto that question-- how did you spend today?-- reminds me to feel and see and hear. It is too easy to become distracted. When the ordinary becomes frustrating, I have to remember those times when the ordinary was forbidden to me. When I was ill, all I wanted was to get back into the ordinary flux of activity. Now that I am back in the ordinary, I have to retain a sense of wonder at being here."

"At the Will of the Body" by Arthur W. Frank

The first quote captures the sense of a no man's land, which is what survivorship, at times, has felt like to me. Not sick, not cured, wondering if I'll truly rejoin the land of the living. But that there's also a danger of getting too attached to illness, that it can become a way of life and framing one's experiences.

The second quote resonated as well. The sense that maybe I live better with a little bit of fear.

This article in the WSJ really interested me. The biotech and pharma companies get a lot of heat for the high price of cancer drugs. I think the real outrage should be saved for our federal government, who should do more to support basic research.

A good livingcured day.

Read more here.

As I thought, the highest risk period for relapse is the first two years (although I'm not sure how that is measured). The article is a bit confusing because it also includes this quote: "The peak of relapse is still within the first three years, but relapses still continue occurring..."

This today in the New York Times. I'm not sure there is any new news in this article. But it is nice to see that survivor issues are getting attention.

As though science and medicine don't already have enough difficulty attracting the best and the brightest. Now this, as reported in the New York Times.

The Wall Street Journal has been blogging summaries of the news from ASCO-- the annual meeting of the American Society of Clinical Oncology. This is an event that is widely anticipated both by the investing community (I hesitate to admit nominal membership) as well as the cancer community.

It seems that some progress has been made in two very difficult to treat cancers-- liver and kidney. Still, no cure. But a little more hope.

I'm sure you've all been on the edge of your seats, waiting for Part II of 'Why Cancer Sucks' as if the natural readership for this blog doesn't have a woefully complete understanding of cancer's suckiness. In contrast to the more publicized sucky aspects of cancer, this series will highlight the less well known downsides to the disease and its treatment.

A few posts ago I mentioned the lymphedema that I've developed. For those who desire a fuller explanation and who are wondering what it looks like, this bulletin from the NCI may help. At its worst, my right arm looks like the post-treatment arm. I've thankfully never swelled as much as the photo on the left. For me, the most interesting thing I learned from this article is that over 30% of patients under the age of 45 develop lymphedema. That's news to me. My surgeon told me I wouldn't develop lymphedema because I'm thin.

When I was first diagnosed with cancer I longed for my former, cancer-free world-- a world that I no longer remember. In a strange parallel, when the lymphedema developed I found myself wistful for the time when I ONLY had cancer worries, and not lymphedema too. Gradually, instead of thinking lymphedema=cancer, I've come to view it more clearly as a side-effect of life-saving treatment instead of a menacing, malignant shadow on my livingcured life.

I have focused my frustration on the fact that lymphedema is misunderstood and understudied. The treatment for it is antiquated and for me, has required a lot of time in hot, uncomfortable compression wraps. However, in a rare glimmer of hope, in late 2006 the FDA approved a promising new treatment for lymphedema. The surprising downside is that I can't find anyone in NYC that is using it.

At this point, I don't know what is worse, the fact that I have lymphedema or that I can't get a hold of something that could possibily help me. The institutions that I rely on for cancer care aren't using it, despite the FDA approval and a very compelling study of the treatment published in the journal Cancer.

Remember: "'It's no longer sufficient to say, 'Well, you survived.'"

Here's more info on the condition for those who are curious.