Today I was waiting for the elevator to take me up to the 21st floor at Fancy Hospital. That's the you're-in-big-trouble floor, where people in wheelchairs and wigs wait for their oncologists and hematologists. I had my tri-annual appointment with my hematologist to check on my polycythemia vera. I noted L waiting too. Her hair was about an inch long, if that. She said hi then asked me for my first name. Then asked me for my last name. Then said she had chemo brain and didn't remember how we knew each other. I told her I had chemo brain too and I explained. She'd just had a cataract removed yesterday and was going to another floor to check in with her eye doctor. Both of her eyes already looked fine. She said she had breast cancer that metastasized to her liver and that she gets chemo for. She said it had been 11 years, which I took to mean since the metastasis. And she's still going. She's a little foggy, yes, but looks pretty good for an 80-something-year-old with metastatic cancer.

On my floor there was an airline hostess going around picking up abandoned newspapers and magazines and asking people if they wanted coffee, tea or water. She had a badge on but I couldn't read it so I don't know if she was a volunteer or if this was her job, to placate people while they waited for doctors who allowed themselves to be overbooked. Everyone was pretty calm, though there were a lot of us there, maybe two dozen or more, sitting around.

My blood counts were pretty stable, so the hematologist wasn't too concerned. At one point she had talked to me about Interferon, which I definitely don't want to take. She reminded me that that was when the itching wasn't under control. But it is and I am so happy that it is. It's always the same old story, isn't it? The rancher who wore boots that hurt his feet and his friend asks him why he wears them then and the answer is that it feels so good when he takes them off. I get upset even talking about how awful the itching/burning was and I am so grateful and relieved that I don't have it anymore because of the phototherapy. Now I'm going to be going only twice a week. When I was a kid I could never imagine myself older than 30 or so, and I certainly didn't ever imagine that some day I would be 55 and standing on a towel to keep my feet from picking up psoriasis skin-crumbs, naked and inside a tank while purple light and heat surrounds me for five minutes and oh yes, I'm wearing an empty pillow case on my head so that the rays won't make my face red and freckly. No, while I was painting freckles on my face with an eyeliner brush I certainly did not imagine that. O brave new world.


Monica Broad said...

Hi Author
Recently I visit your blog, You have great blog with good images and detail.
keep it up

Anonymous said...

In the almost two years I have gone to Gritty Hoi Polloi Hospital absolutely no one has ever inquired after my comfort in any of the many waiting rooms I have graced. Sounds like I am flying Coach and you are in First Class..

Have you looked into this?

Project LEAD is the National Breast Cancer Coalition’s premier science training program for activists, that has created a revolution in the world of breast cancer research and public policy. The courses prepare graduates to engage in the wide range of local and national forums where breast cancer decisions are made. Project LEAD graduates bring an educated consumer perspective and critical thinking skills to the important issues and controversies in breast cancer.

The National Breast Cancer Coalition offers several different Project LEAD training courses. Each course focuses on preparing advocates to engage and effectively influence breast cancer decision-making within different types of forums available courses range from shorter introductory courses open to all to longer intensive courses in which students are chosen through a competitive application process.

As a result of NBCC's work, scientists, government agencies and private industry have changed the way they design and implement breast cancer research and programs. Through the research inocative work of NBCC and the training of Project LEAD advocates, NBCC has created a model for consumer influence marked by transparency, innovation and a peer relationship among scientists, researchers, policymakers and consumers nationwide.
Latest User Responses:

Hi, The NBCCF Conference for 2011 promises to be one of the best ever! A new sense of urgency to end breast cancer, how to spread the word about Breast Cancer Deadline 2020, a conference to learn and to act! Please come! Nancy Ryan, New Hampshire

We ended polio in 7, let's end breast cancer in less than 10!

Let's end breast cancer once and for all!

Cancer Bitch said...

Project LEAD sounds very interesting. I'll look into it.
C. Bitch

Anonymous said...


Great NYT article on MBC. Previously you posted Roni Caryn Rabin's "Help a Reporter Out" inquiry.

She did a great job!

Cancer Bitch said...

I just read it before reading your comment. I'm posting about it next.

Cancer Bitch said...

The similar boat. That is what we go out on in spring and summer, in the nasty Chicago River. We are members of ROW, Recovery on Water, which is not for recovering alcoholics but for women who've had or who have breast cancer.