Changes -- the Hospital / future plans

The Hospital -- It's funny how it feels kind of like home, how I can't go in there without seeing someone I know, usually right in the parking lot. My anesthesiologist, my social worker, other patients, my doctors, a whole range of nurses. How, even though it is confusing to get from one building to another, my feet now know the way without hesitation even when my brain does not.

It is some sort of turning point, that I am reading less about cancer and more about travel, namely, to Mexico. Several people have recommended taking a trip once I finish treatment. They say that patients often feel let down after the end of their treatment, with its daily routine, and all the attention from and contact with a big range of health professionals. So plan a vacation so that you have a wonderful celebration for the end of treatment, instead of a feeling of post-partum about your identity as a cancer patient. Rosie is Hispanic, and has relatives in Guatemala, so that and Mexico are possibilities. It is more fun to read about Mexico than about cancer!

But on the other hand ...

Re. the What Do We Feel About Our Bodies? entry below (Nov. 17). Of course, it's not fair of me to be critical of those who choose reconstructive surgery. I realize this is a very individual decision, and in my case my feelings are colored by my no less than irrational fear of surgery. I still don't understand why I was so afraid of the operation. It wasn't fear of losing my breast, I know that, since I don't really mind having it gone (even though I am sometimes surprised to look down and see it gone). So I certainly wanted to keep my surgery to a minimum, meaning no reconstruction. And hearing about the painful recoveries of women who have chosen reconstruction, I know that for me, I have made the right decision.

My "Blanky"
Treatments continue to go smoothly. The skin of the treated area is perhaps feeling a little sensitive, but not much. I bought a very cheap little fleece blanket, to wear over my shoulders as I wait for treatment. I guess I'm a little phobic about being cold when I'm waiting (and during the treatment, but I guess my arm-warmers are all I can do about that). And it seems like a good place to bring a security blanket (or security anything). I still keep fanaticizing about ways to brighten up that machine - could I sneak some stickers on it?

A member of my support group (she also has IBC -- inflammatory breast cancer) - is in the hospital, I've been dropping by to visit her when I'm in for my treatments. We had been "neck and neck" in our care, since we were diagnosed at the same time. But ever since our surgeries, she's had some setbacks. That emphasizes to me how random cancer is. It's like that when you're first being diagnosed, but also within the illness -- one day you think you're on the right track and the next day you are off on an unexpected tangent on your pathway to recovery.

back to "Normal"??

Wednesday is my "all-cancer" day. My Support Group meets in the morning. Then the Mind-Body Medicine class has been meeting Wednesday evenings. As I write I'm in between my radiation treatment and my last Mind-Body class. Although I have learned some very important things in this class (ten sessions), I will be glad to have my Wednesday evenings back. I am still reading books about cancer (or rather about dealing with cancer), but I am beginning to feel like devoting less time to being a cancer patient. I want to get back to “normal life” – not to the extent I was before, but I do want to pick up some important projects.

What Do We Feel About Our Bodies? My Humble Opinion
Today in my support group, someone observed "I never knew how many breast-less women there were out there until I got cancer myself." Once you start telling people about your own diagnosis, they come out of the wood-work. But I keep thinking they shouldn’t be “in the woodwork.” They should be “Out.” It's the artist/activist Matuschka who feels that hiding the fact that we have had surgery keeps cancer patients isolated from one another. I realized I had never seen another scar apart from my own -- which is amazing considering the health clubs that I've belonged to in the past. These women are hiding themselves. Knowing that there are so many women out there who have gone through this would lessen the shock of the initial diagnosis. It would make the disease less mysterious, less confusing. Also the feeling of the need to pursue an imposed perfection -- through reconstruction or prosthesis -- keeps women from being able to appreciate their own bodies, as they are, post-surgery. If one in seven women get breast cancer, having a scar should be normal, not something to be corrected. Well, my humble opinion.

Me In October 2005 -- taken by Rosie 

Treatment 2

Still fine. The machine is really on only very briefly, three "blasts" (there is an electronic sound, not loud) of less than 15 seconds each. I'm rubbing in some special lotion someone in my support group gave me -- I am well prepared because of this wonderful group of women.
I am feeling clever about the "arm warmers" I invented, cutting off the legs of a pair of thick tights and using them to keep my arms warm while my torso is bare. Dr. Brown said she'd never seen anything like them before. Before my treatment, I went and visited two members of my support group who are in the hospital. One had a bilateral mastectomy, and the other is now in radiation like me, but still having problems from her surgery in October.

33 Short Entries about Radiation

First Treatment -- Went very smoothly. I walked in and two Radiation Therapists treated me right away. These are people who are never going to see me fully dressed, I guess. The radiation itself seemed to be on for less than a minute, three times. One dose is from the back, and when I saw Dr. Brown, I asked her if the platform I'm on doesn't block some of the rays. She was emphatic that it doesn't, and that it takes eight inches of metal to block the rays. Then I grasped that the reason I am bare-chested for the treatment is not so cloth won't block the rays, but so the Therapists can see what they're doing. It's all in the tattooed dots, lining up the machine to them. The Doctor told me one set of dots are the "in" set, and the other shows where the rays go out. Anyway, the set-up is what takes time; I was done in 20 minutes. I ran into a colleague from my support group; she is still having problems from post-surgery swelling that make it difficult to "assume the position" for radiation. I guess I am lucky that everything is going smoothly for me. One down, 32 to go.

Slouching towards Radiation

Friday was another prep session for my radiation treatments, that begin tomorrow (Monday, Nov. 15). Following my surgery, I felt so relieved, and optimistic that the radiation would be the easiest part of my treatment. Now after these prep sessions I'm feeling a little daunted. Huge machines, laser beams, more drawing on and measuring of my chest. It's all cutting-edge science, that's for sure -- I really feel like the energy and research that is going into making me well is no less involved than that of putting a man on the moon. I saw some of the diagrams that came from my last prep session, like a detailed topographical map of what's between my ribcage. They are actual physicists who do this, as well as the Radiation Therapists who I met, and who will be my "team" for the next six weeks.
I still am thinking that things could be done to make the treatment process less cold and intimidating. I was imagining the big machines covered in brightly colored fake fur -- now that would be warm and fuzzy!

Moving On --

I’ve been feeling so good! Lots of energy. My eyebrows are growing back -- their full shape is defined by a dusting of stubble, and I was even thrilled to find a hair on my chin!! Wanting both to celebrate and encourage this zesty energy, I signed up for a health club. As I thought about doing this, one of the daunting things was thinking about showing my mastectomy scar in the locker room. I belonged to this club a few years ago, and I never saw anyone with a scar (it is a women-only club). I had to do searches of mastectomy scars on the internet, to try and get some notion of what mine would look like. So eventually I realized that if women haven’t seen such a scar, they should. If one in seven women get this disease, we shouldn’t be hiding!
Then the other thing that started to worry me was feeling self conscious about my lack of pubic hair. AS I looked in the mirror, I wondered if I had enough pubic hair to try a convincing comb-over. ;-) Just kidding, only a man would be silly enough to think a comb-over could be convincing! And now that I'm going to the club, I recall that locker room etiquette of course means that no one ever looks at anyone who has their clothes off ....

Radiation -- the next step

"They marked me up like a side of beef," I laughingly told a friend about my radiation simulation, the measurements and preparations for my radiation treatments. Although all the Doctors and technicians were as nice as could be, nevertheless: having three or four white-jacketed scientists standing over me and talking about me, marking me up with Sharpie markers, drawing dotted lines and circles, laying pieces of wire on me (using them as a plumb line? I don't know), shining red light beams on me, tattooing a set of tiny dots onto my skin -- there's no way that all this can be done in a warm and fuzzy or even personal manner. As the staff talked over me, I tuned them out, closing my eyes and breathing deeply. There was some discomfort in all this, as I had to have my arms over my head as I lay on the platform, resting them in stirrups -- which started to feel like handcuffs (my right arm is still sore from surgery, remember). And of course I was naked from the waist up, and they always seem to have it extra cold in places where this occurs (to enhance that meat locker effect?) The platform I was on moved around as they took a series of x-rays that became a 360 degree view of my torso. At the end of this the technician draped a robe over my chest and snapped a Polaroid. Just like at Abu Ghraib, they wanted to have a little photographic memento. When I asked, I was told they just want to be able to match the x-rays with my face. So why not have me smile for the camera?

Next was another CT scan. I'm getting used to this one. I kept thinking they should get artists involved in the design of these big medical machines, to make it a more aesthetically pleasing experience. It wouldn’t impair the function at all. I imagined a CT machine designed by William Morris, and one designed by Peter Max. I guess I should write to GE, the manufacturer?