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  • a happy, ordinary, middle-aged, suburban woman who paints odd pictures, gardens in a straw hat, lives with the love of her life, is owned by one cat and the ghosts of several others, and walks a little funny 'cause she has a fake leg. She started this website because there's more to life than what we lose, and we need to let each other know what's possible, even if it's only a happy, ordinary life.

November 2011

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Good reads, grownups only

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I've had cancer and have been through high-dose chemo. I've seen two relatives "die fighting" incurable cancers (pancreatic and metastatic melanoma). So I feel like I can speak with the authority of experience when I say that I would, most likely, choose a path very similar to yours if I was in your shoes.

I don't think you are suicidal at all. Rather, you are maximizing your options and living a high-quality life. I find your choices quite wise given your circumstances.


Well, I wish I had some decent words to say but I actually don't, except for what a great guy. Most guys wouldn't stick around. He really loves you. And sometimes, you know, doing what the person who loves us wants us to do is actually not a bad thing. I don't know..


Wow. I know you didn't post this to get pats on the back and such, but I can't help myself. You are an inspiration, Sara, plain and simple (or ornate and complicated if you prefer, because you can be that too!). This is beautiful, beautiful writing.


Thank you, Jana.

People who have been through as much with cancer as you have both personally and vicariously often understand completely. What's terrible is when I have to face people I love who find themselves in similar but at the same time so very different cancer situations of their own for the first time. Their choices are necessarily going to be different from mine, and this, like the basic unfairness of life, is sometimes very difficult for them to accept. The unfairness of it all is difficult for me to accept, too, frankly. Most people with cancer, rightly or wrongly, suffer a great deal more than I have yet. Obviously, I don't feel the need to suffer as much as others do to make things fairer; obviously, I wish for less suffering for everyone.

As I've written elsewhere, for example, I have a close friend in California whose little daughter is undergoing treatment for acute T-cell leukemia right now, and I have no answers for her. She asked me at one point, while she was trying to decide whether to allow her brilliant and deathly ill child's brain to be prophylactically irradiated, why I hadn't gone through anything like this. I ignored the question because (a) we have discussed this many times and her emotional state was just preventing her from remembering the specifics, and (b) it had nothing to do with the choices she had to make and I didn't want to confuse her. It is hard enough being thrown into the world of having to read and interpret available studies as written up in medical journals not really for a layperson under extreme emotional duress without also having to filter extraneous and irrelevant material from other people's lives.

The fact is, childhood leukemia is a very different disease from metastatic malignant melanoma, even though they are both called "cancer," and things that do not work for melanoma work very well to cure many, maybe even most cases of childhood leukemia, even though the short- and long-term side effects can be severe, even life-curtailing. People often do not understand how two kinds of cancer can be so completely different, and yet there are hundreds of types of cancer, and every one of them needs to be regarded and approached as itself alone and strictly within the context of each patient's individual life and goals.

What I could tell my friend is what I thought of the studies she sent me, what further questions I would ask, and not to be shy of demanding that the oncologist take all the time necessary to explain everything to her. Then, when she made her decision, I gave her my unqualified support, urging her only not to berate or second-guess herself but just move forward and hope for the best.

Her daughter is currently in her second course of high-dose chemo on top of the radiation and will then get some kind of, I don't know what to call it, maintenance chemo, I guess, for a long time after. The chemo has just caused thrombosis and seizures, but will not be suspended at this time. Fingers crossed and all that. And meanwhile, I feel strongly that the educated, careful choices my friend has made for her daughter have been absolutely correct even though they have their own grave consequences, and even though they are very different from any choices I would make for myself with regard to my melanoma.

This is scary and confusing sh*t.

Snoskred, thank you so much for seeing what a great guy I have. I worried very much that I might make him look bad, but he is not; he is wonderful, and he does love me very deeply. Besides, I can tell you from experience that it is much harder to be the person who loves a sick person that it is to be a sick person. Much, much harder.

I was once married to someone who really treated me badly. My first surgery left me with a deep, approximately 15cm wound on my calf covered by a skin graft sealed with 52 staples. I was given halcyon for my nerves and some kind of opiate for pain, and sent home. I feared the halcyon and never took it, and the opiate made me sick and didn't really work, so I only took a couple of doses, then put the bottle away. The day I was to have my staples out, my surgeon advised me to take two of the painkillers before coming in.

Well, I went to do that and discovered two empty pill vials where the halcyon and the opiate had been. My then-boyfriend/ex-husband-to-be (yeah, I eventually married him anyway; yeah I'm embarrassed about that) had taken them all recreationally, without asking and without warning me. I had to have 52 staples removed without any kind of anaesthesia, and the skin had grown over many of them, so many of them had to be dug out not just plucked from my flesh.

Compare and contrast with my true love. Seriously. My true love is passionate and honest and only hurts because he loves me. I am the luckiest woman alive.

Sognatrice, thank you for your kind words. You're right; that's not why I posted it, but still -- all support gratefully accepted.

The Goldfish

If I was your boyfriend, I would probably feel exactly the same; I would want TIME with you, for as long as possible.

But I totally understand why you make the choices you do. No, more than that, I admire them. He he, sorry, I know you have cancer and everything, but I think I'm going to go and call you "brave". The pressure must be immense. Not just from those who love you, but there's such a strong cultural narrative demanding that you fight a Battle with Cancer. To be a Conscientious Objector, or at least to break away and battle in your own way, to fight for the things that you value the most, is a pretty brave thing to do.

I am, however, full of rage at the system you've got whereby a person's health has a price tag, and that money should ever factor into a decision about getting something checked out. Hope your insurances gets sorted soon and the mittelschmerz turns out to be something simply, harmless and easily sorted.

Thanks for sharing all this. That also must have taken some guts.


Thank you, Goldfish. I'm not really brave, you know. Because I am now completely needle-phobic (very hard to find veins; fifteen sticks before hitting one is not unheard of in my life), four years ago I had to see a behavioral therapist before I could submit to even a single blood test. I really reject on a profound level the idea of putting myself in the way of gratuitous suffering. "Gratuitous," though, is the operative word here.

I want more time with my true love, too. I just don't want the bulk of it to be, as y'all say across the pond, rubbish time, not if it doesn't have to be. It's my argument that it makes no sense for me to subject myself to Brave New Ideas that promise little in the way of treatment and lots in the way of immediate misery and longterm deleterious effects.

As for the rage, oh yes, I assure you I feel it to. And again, remember that I have it relatively easy. For more true horror stories of the American medical system, visit these fine links:

Oh, and then there's my general take on the whole nonsense of insurance.

Rage on. I just wish my countryfolk would rage a little harder about this, too.

And I can't help but wonder how we can afford to wage all these wars but we can't afford to, I don't know, give Kay as many trach suction kits as she needs. Grr.


Hi Sara, I found your blog through Bleeding Espresso - you DO have a thinking blog. Wow. I feel so sad, but I can tell you don't feel sorry for yourself. You are a brave young woman, and you do have a good guy. You deserve it!


You know, Cherrye, I'm really not especially brave, just like I'm not young. (Turning 44 last month places me ever more firmly past the middle of middle age.) But I am lucky to have such a nice man and, overall, such a very nice life, even with this big fat complication.

Meanwhile, I'm sure you already realize that just about every single person on this planet has some perfectly crappy thing to deal with, whether s/he chooses to reveal it to you or I or not. Some of the horrors our fellow humans deal with daily are more obvious than others, some more terrible than others, some simply more than others. If you think you know or can point to someone who doesn't have any serious problems, I guarantee you s/he has or s/he will. No one is exempt. No one. I believe the Buddhists have a word for this, "samsara," signifying the fundamentally unsatisfactory nature of life.

The world is full of walking wounded. Some of us just have blogs and type really fast. :)

The Goldfish

I empathise with the needle thing, even though I've had it fairly easy. Following my last major relapse, I had a period of three or four months during which I had to have about a dozen blood-tests (may have been less, probably was). And even though it was nothing compared to some folks (like Type 1 diabetics - eek!) every time I went, I was more scared. Because it *does* hurt, and it especially hurts when your whole body is tender and there's still a bruise from last time...

But the decisions you write about here are brave.

I once heard a cancer specialist on a radio programme talking about the future of cancer treatment, the potential of genetic stuff etc., and he said that current cancer treatments are really rather like thumping the top of the television set when the picture is flickering. Often the picture returns just fine, but you don't really know why - or why it doesn't work at other times. In any case, thumping electrical appliances is a bad idea in any other circumstance.

Hmm, now I've written that down I'm sure the analogy made more sense at the time...


Actually, that makes perfect sense to me. Naturally, I wouldn't say it was true for all cancers and all treatments, but it does seem true for many. And the problem is, medicine doesn't currently have anything besides TV-bludgeoning-style treatments to offer in many cases, because we still don't know what causes many cancers, and even when we can point to some definitive indicators, like a certain genetic marker, there are no across-the-board answers. People get breast cancer who don't have the same marker that other people do. People get melanoma who've never smoked, never spent time in the sun, never inhaled Chlordane fumes, and some of them do have a specific marker, but some others don't. But it's all considered the same disease.

Meanwhile, people facing the disease are terrified, don't want to die and don't want to let down their families, so they let themselves get talked into things, things that get offered to them because there is nothing else.

Yet. We live in hope, literally.


This sounds very sensible to me. Only brave in the sense that holding a course when lots of people want you to do something else is brave. It's not paranoia to want to avoid American medicine, especially at the cheap end, & especially now. There's a very few things I'd let them do to me, at this point. They seem to have no training in evaluating odds at *all*. God help a doctor in a poker game; he'd get fleeced every time. You look at the odds and place your bets. Chances of full remission, in your case, very small; chances of being horribly ill, 100%. You just have to play the odds, in this life. Betting everything every time on the chance that you'll win big is no way to win a game of chance. Okay, so forty more years of glowing health is the big jackpot, and sure, you'd love to get it; but the odds would have to be a lot sweeter than they are, to make it worth the risk. Destroying your immune system and then hanging out endlessly in their specially-designed breeding ground s for mutant staph? No thanks.


Thank you, Dale. Agreed, obviously.

I do have to stress that I would never say it was the right choice for every person with every cancer, not even every melanoma. But you have summed up where I'm sitting pretty exactly.

I think it's very important that people know that it's okay to at least think about these things, and talk about them openly. There isn't just one path, and everything that's offered to a patient might not be that patient's best personal choice. Maybe nothing is. To add another metaphor to the mix, you know, when you go to a restaurant, you don't order everything on the menu. And even if the specialité de la maison is the celebrity chef's world-renowned coquilles St. Jacques, if you're allergic to shellfish, you should really think about ordering something else -- or going to a different restaurant.

As Goldfish noted above, there is an awful lot of pressure in our culture to put our care in the hands of "experts" and look like we are fighting the way people with "The Big C" do on TV, and I do fear that TV (including the news; don't get me started) is all most people know of cancer until they or someone they love gets it. And then what kind of emotional and educational resources do they have to draw on in order to assess their own options? Not much. Just all these tightly compressed tragic and heroic images which have very little to do with real life, or the value of their own lives.

So, anyway, thanks for your two cents'. It helps.

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