A sewing project

[kate_schaefer]

Today I finished a sewing project for my friend Q. You probably don't know Q; she's not part of the science fiction community, nor is she someone I went to school with.

Late last summer, I noticed that Q's shirt fit her oddly. Tactfully, I suggested that she adjust her bra, which had obviously gotten twisted somehow. She turned away for a moment, then told me that the problem wasn't her bra -- she wasn't wearing a bra -- it was her breast. It was the large tumor in her breast, which had made her bras too uncomfortable to wear and which had finally grown to a noticeable size. I was the first person who had commented on it, she said.

Oh, I said. Probably other people hadn't noticed yet; since I am, in theory, a clothing professional, I look at how people's clothes fit more closely than most people do. I am uncertain whether that's true, but at that moment, I wanted Q to feel less embarrassed.

Q may be the staunchest believer in alternative medicine I know, to the point of rejecting most of the hard-won body of knowledge of western medicine in favor of naturopathy, homeopathy, acupuncture, nutritional supplements, and exercise. Me, I have nothing against naturopathy, homeopathy, acupuncture, nutritional supplements, and exercise, but I want them used as adjuncts to western medicine. If I were to move over to having alternative medicine as my primary treatment method, I'd still want the lessons of western medicine working in my favor. Q wouldn't have a broken leg treated by sticking needles into it; she'd get it set and braced, and then she'd stick needles in the appropriate spot to, oh, I don't know, improve blood flow and energize the body's healing forces. I wish she'd gone for surgery and then turned down chemotherapy in favor of alternative practice.

When she developed the tumor in her breast several years ago, she decided to treat it by improving her nutritional practices, drinking more water, and getting more exercise (and other stuff; I don't know what all she tried, and I don't need to know). Her overall health improved. She was strong, energetic, and really healthy, but she had that lump in her breast. Sometimes it got smaller, she said, and sometimes it got larger.

By the time I noticed it, the tumor was as big as my fist. I don't have a big fist, but that's still pretty damn big for something that doesn't belong in the healthy body.

I made Q an undershirt with an inside pocket over her healthy breast to hold padding to make it look as large as the tumor-swelled breast. I used organic cotton for the shirt and for the padding, because she wants to avoid unnecessary chemical exposure. I made her a set of pads in graduated sizes to put in the pocket, to reflect the changes in size as the tumor (occasionally) shrinks and (mostly) grows.

Q likes the undershirt. It evens out the lopsidedness and keeps people from staring at her. I got two more and fitted them with pockets, which I delivered to her today. I gave her some extra pads for the pockets; she needs them, because the tumor's bigger.

It's a thing I could do; it's all I could do. I cannot make her make different medical decisions; she's not stupid, she's not misinformed or uninformed or crazy. She's researched all her options, and she's chosen a course I'd never choose, knowing the likely outcome.

Comments

[samildanach.livejournal.com]

I admire your compassion and your courage. If one of my friends made a similar decision and I knew about it, I don't know that I could have done the same as you. (I have the engineer's impulse to fix the world. Sometimes this is beneficial, and frequently it isn't.)

We went to UUC services this morning for the first time in a few months, and Reverend Grace spoke on courage in difficult times. It seems to me that this is what she meant.

[kate-schaefer.livejournal.com]

Thank you. I'll accept the praise for compassion with all the arrogant humility I have available, but I have difficulty with the idea that the small thing I can do has anything to do with courage. I do want to fix the world; I want to fix Q; I can't. I can sew.

Oh. All right, I see what you mean. Thanks.

[tamiam.livejournal.com]

Thank you for telling this story of kindness, compassion, and understanding. Courage and belief on her part, and unconditional acceptance on your part.

[kate-schaefer.livejournal.com]

I don't understand, though. I don't understand. When she first learned about the tumor, several years ago, she probably could have had surgery with a good chance of success, and she decided that wasn't what she wanted to do. That's not a decision I could ever make in that direction. Refusing chemo I can understand, though I probably wouldn't choose that myself. Well, it would depend on the circumstances.

It makes me angry. Well, I'm middle-aged. I can live with being angry about things I genuinely can't change, and go on and do other things.

[ladyjestocost.livejournal.com]

I don't know if this would help you feel better any, but I've had a benign tumor removed that was easily the size of a pluot. It stuck out considerably too, although not on my breast (Although I have another, smaller one there. My doctor and I discuss having it removed, but she thinks I'd end up with a scar that looked worse than a small bump.)

It's my understanding that many tumors are benign, actually. The sort I get are called lipomas and one in a thousand people get them. However the cancerous version only happens to one person in sixty thousand.

I think you're doing a good thing for your friend, and I can't see how you could do any differently - at least not in any right way. I wish for your sake that she'd let conventional medicine do what it does very well; surgery. Perhaps, if she's seeing someong in the alternative community, they will suggest this.

[kate-schaefer.livejournal.com]

Thanks. Q has finally seen a surgeon, but only for an opinion. It's not a lipoma, or any other kind of benign tumor as far as the surgeon could tell without doing a biopsy. The surgeon thinks it's inflammatory breast cancer; certainly it looks just like the scary pictures of it on the web. It's too late for surgery without chemo to shrink the tumor first, and Q won't do chemo.

And even benign tumors can kill people (I know you know that) if they get large enough, if they obstruct blood flow.

[fastfwd.livejournal.com]

I blame the cost of medical care in the US.

I know that this is why Kathy Acker took the route she did when she developed breast cancer because she wrote a very long, detailed article about it.

Sometimes you believe because it's the only road open to you.

US medicine. So advanced, so compassionate. And if you can't pay your $30,000 bill, they'll turn you over to a collection agency which will try to take your house.

Signed,

Been There

[kate-schaefer.livejournal.com]

Thanks for the reminder about Kathy Acker. The cost wasn't the reason Q made the initial decision she made, though cost constrains the things she chooses to do now. Q has had a consciously chosen life in lots and lots of ways; if she had decided to have surgery when she found the lump, she could have had it. Washington State has a program specifically covering breast and uterine cancer in uninsured low-income women. If she wanted to have surgery now, when it's much more risky, she still could have it, but she would have to undergo chemotherapy to shrink the tumor first, and she won't do that.

Which is not to say that I think the US medical system is well-organized. It isn't. In this time, in this place, this particular kind of cancer has Medicare coverage, but this particular person has chosen another road.

[annafdd.livejournal.com]

This is a terrible and very tender post. I hope your friend's tumor is, indeed, a benign one. You are a wonderful friend.

[wild-irises.livejournal.com]

What she said.

[kate-schaefer.livejournal.com]

Thanks, Deb.

In this as in other situations I run into in this long middle stage of life, I find myself thinking about a conversation I had with you years ago, wherein you talked about the seduction of becoming a foul-weather friend. I try to avoid it, but it's easy to get sucked into the seductive hope of making a difference to someone who really needs something. The something that person needs may not be the something I can provide, but boy howdy does that person ever need something, and I respond to need.

In this case, I'm a lot clearer than I sometimes am about where the boundaries lie. Q isn't a close friend, though she's someone I've known for many years and someone I care about. She has a large circle of friends who are doing far more to take care of her than I am, most of whom are much more supportive and understanding of her alternative care decisions than I am. I am a peripheral friend of Q's; I expect to hear if and when she dies, but I don't expect to be involved in her day to day life now, any more than I was before her illness got overwhelming.

What I have done for her improves her quality of life in an immediate, intimate way. It doesn't do a damn thing to prolong her life, to save it from the immediate threat. In some ways it is a perverse favor: I have made a prosthetic to allow a healthy breast to look more like an unhealthy breast. In other ways, it's straightforward: I have allowed a woman who prefers not to attract a lot of public notice to pass without much notice.

It's the only useful thing I can do for her, and it may be the last thing I do for her.

[vgqn.livejournal.com]

the seduction of becoming a foul-weather friend

Much food for thought in that phrase. I'd love to see further discussion.

Is she as clear about the boundaries as you are? There have been many times where people have taken what I thought were ordinary kindnesses (e.g., visiting in the hospital) to be much greater, deeper gestures of friendship than I considered them.

And as everyone else has said, this is a very kind and wonderful gift you have given her.

[kate-schaefer.livejournal.com]

Foul-weather friend: always willing to listen when life is catastrophic, but never available if you just want to go to a movie. Any decent human being is going to put in some time as a foul-weather friend to somebody.

One wants to make sure to spend time with people who aren't having a crisis right now as well. One wants to have ordinary friendships, the sort that across time happen to include plenty of bad experiences as well as good ones simply because all of those experiences come along in the course of a life, rather than the unbalanced variety of friendship in which one is always the person lending the sympathetic shoulder, or always the person needing that shoulder.

Being a foul-weather friend is seductive because it's always so completely obvious what the payoff is: X needs me! Now! I am important in the world because I'm saving X!

(Kate looks back through the thread to see who else will be reading this subthread: Anna and Deb, besides Karen and whoever wanders into it later. Anna and I are not close, but happy to see each other at Wiscon and online, unlikely to become much closer because of the distance in miles, temperament, and ages, but also unlikely to stop being happy to see each other. Deb and I are close friends despite living far apart, with a rueful common interest in foul weather that can interfere with simple ordinary fun together. Karen and I are long-time not-close friends who are frequently given each other's name-badges at conventions; if we lived in the same city, I suspect we'd be closer, because we do have interests in common, but since we don't, we'll go on dining together once every year or two and observing with interest whatever bits each writes online.)

I think Q is quite clear about the boundaries. She works in health care herself, which is a major source of her skepticism about western medicine, and that's not a field in which one can work long-term without good boundaries.

Visiting someone in the hospital is not an ordinary kindness. It was an ordinary kindness when we were growing up and learning our manners, but in the meantime, hospital stays have changed character dramatically. They are either much shorter than they used to be -- so that there is no time to visit the hospitalized person -- or much longer -- because the hospitalized person isn't going to die after all, but is hooked up to exotic equipment that didn't exist in our youth. I know that I am generalizing wildly here.

If the person in the hospital is someone I'd go out to dinner with in a big group and converse with cheerfully, I still wouldn't visit unless someone told me that X specifically asked about me, or if (foul-weather alert) I learned that X had no or few visitors, or if X were so ill that it's goodbye time. If the person in the hospital is someone I'd invite out myself solo, I'd go, or I'd intend to go and fail to make it because the hospitalization was over before I had an unscheduled opportunity.

[vgqn.livejournal.com]

Thanks for this long & thoughtful reply. Your characterization of our relationship as 'long-time not-close friends' who might well be closer if we weren't constrained by geography is spot on. Debbie is so good at long-distance friendships. I barely manage to maintain what ones I have, with very spotty communication on my part. I'm glad you post to LJ so I have gotten to know you a bit more.

Thanks for the hospital explanation too. I never thought about it as changing mores.

I'm still musing over foul-weather friend. I like to help but I recoil from needy people, and have rather a horror of those who live their lives in perpetual crises. But I know I have still felt that tug at times, of "I can help!" And have sometimes caught myself by saying, "Wait, do I really know this person well enough?"

But I don't regret helping some casual friends with their chicken coop raising last year.

[kate-schaefer.livejournal.com]

Thanks, Anna. Unfortunately, it's much more likely to be inflammatory breast cancer.

A note on new comments

[kate-schaefer.livejournal.com]

I've received more anonymous spam on this entry than on any other entry in my journal, probably because it includes the word "breast." I've also received innocuous comments from people I don't know, advocating alternative medicine for dangerous diseases. I've chosen to delete and report the spam, and simply to delete the innoucuous comments from people I don't know.

Cancer is hard. The choices around it are hard. I wish you all good luck and endurance. If I don't know you, my good wishes are not an invitation to use this LJ entry as a place to discuss that journey.

Thank you.