10/27/95
Mid-Chemo;
Recalling the Discovery in May

10/27/95:

Loved ones:

In May I had a pain in my breast, which is not unusual because I'm very granular, and it hurts if I bump into the steering wheel, etc. So I just assumed that was what was going on and ignored it for several days. One evening I was coding and leaned forward and bumped the keyboard, and felt the pain again, and thought, "this has been several days -- kind of a long time" and idly felt the area of the pain. And there was a lump the size of a walnut! Well, you can imagine how I felt (tho that was minor compared to what came later). So I rushed in for a mammogram.

The mammogram confused everyone. It looked like a cyst, yet there was a slight suggestion of a tumour (stardust type calcification, ringing the bottom of the cyst). Well, turns out it was both. The docs don't believe me, but all the cancer women do, I am SURE that the cyst was my body's reaction to the cancer, a way of yelling "help, something is wrong!", like the way a welt forms over a thorn in your skin. Anyway, the cyst saved my life (if indeed I live), because cancer is tiny and silent and normally has no associated pain. The type of tumour I have, even 2 more weeks might have meant it would metastasize.

But at that point they still thought I'd be fine, and did a lumpectomy. Well, not only was it cancer, but a particularly nasty, agressive cancer. I was shocked, as you can imagine. So they put me in for a bone scan (clean as far as they can tell), and I had more surgery for a lymph dissection (clean for 24 nodes), which confirmed that we had caught this very, very early. Normally, with clean margins, clean bones, & clean lymph, things would look good, but my cancer was so savage, they felt it was necessary to do both chemo and radiation, due to the slightest chance that some seed of this thing had already attacked elsewhere. When he told me how long it was, and I realized the rest of my whole year was destroyed, I cried for the first of only 3 times that I have cried. I had spent the whole previous year nursing a very beloved friend, eventually moving in with him when things got really bad, and then he died on New Year's day this year. And I had been thinking, when I get over this, this will be My Year, and no more sick rooms, and I will put my life together, etc. -- and then they tell me I'll be in chemo all year.

Accck!

But of course, I did what I had to do. I THOUGHT I knew how much I love living, but I didn't really know, I didn't know like I know now. Dominick taught me a lot about that in his last year, but it took looking death right in the eye to really understand what life means to me. My chances are good (60%), but even a 40% chance of dying seems like a lot, and I often get frightened. Strangely, it's not a raving, panicky fear, it's more a sadness fear. I really, really don't want to die. I don't want to vanish. I don't want to not exist. This is part of why I sewed for Kevin the lop-ear rabbit, rather than buy something -- if I can't be there to counsel and befriend him, at least there can be some piece of me, uniquely me, that he can hold in his hands.

And this fear won't go away when the chemo & radiation end. It will just begin. In the Cancer Forum, night after night, members come in to say "Oh my God -- I went for my 3 year check up, and they told me it's everywhere now, and I only have two months!" This happens constantly, and it's frightening. Medicine is very primitive in this area, and they have no way of knowing you don't have cancer. There are some tests that might tell if you do, but they're unreliable, and "passing" such a test does not mean you are safe. So my next challenge is somehow learning how to deal with a life of fear and uncertainty. I think I will learn, but it's a hard row.

The chemo has brought baldness, mouth sores, violent diarrhea, insomnia, hot flashes, indigestion, hives, joint pain, infections in the eyes from no eyelashes, infections in the nose from no nose hair, diziness, bleeding, exhaustion, nausea, vomiting, you name it. Radiation, beginning of the year, will continue the low blood counts & fatigue, plus bad burns, but at least the rest of the ailments should go away. I look forward so much to being normal, there are no words.

It's no problem to share my news, if you choose. I decided very early to "come out" re cancer. It's a shame we keep it such a secret, you don't know that you have people you could ask questions of, or support that could be there, and most of all, I'm horrified at how many women I've found who don't take exams seriously. I tell them, "If you're sitting here chatting with me a year from now, the ONLY reason will be that I got checked," and try to make them understand how precious life is.

Thanks so much for your warm and solid-friend ear.

Pencil graphic from Hee Yun's Graphic Collection