This has been a long time coming. It's one of those things I was thinking about when I got sick a few weeks ago. You may find it disturbing. I question the wisdom of publishing it at all. I just have this screaming feeling that, even though no matter how I tell it it's bound to be both repetitive and an oversimplification of many, many things both feeding and starving my life at all times, this part of my story needs to be told, discussed, aired out. Maybe it only needs to be told for me. Maybe I'm popping a blister, or maybe I'm kicking a wasp's nest. I guess I'll find out.
I am not suicidal. Notice I do not say that I have never felt like killing myself, or that I have never wished to die. I don't wish to now. I have suffered crushing grief alarmingly frequently, have felt heart pain so intense and fear so grave and encompassing I wished the earth to open and swallow me or that I could dissolve into air without effort. It's not the same thing as being suicidal.
My family is peppered with bipolar disorder, among many other mental, emotional, and neurological conditions. Two people in my immediate family, two people I knew and loved, killed themselves while I was still young.
My cousin P was an accountant, son of a dentist who gambled and a woman who smoked until she lost a lung, then still couldn't quit because her husband wouldn't quit, too. I remember how proud everyone was when P finally got his CPA license. It took him awhile, because he was bipolar and suffered interruptions.
By the time he died, by my mother's count, he'd had several nervous breakdowns, received shock treatment more than once, and been divorced twice. The story my mother told me was that one day at work in his office in New York, he took off all his clothes, sat down in the middle of his office and began to cry inconsolably. His mother was called, and she flew to New York at once and brought him back home to Miami. I think I was about seventeen when this happened, maybe a year younger or older, and am now quite sure it did not happen as I pictured it then -- the call to my aunt, urgent voices, a rush to the airport, a cab to a glamourous high rise in Manhattan, my aunt rushing up, up, up in an elevator, dashing in high heels and a round hat into my cousin's big corner office with all the windows and wood paneling, her coat swirling around stockinged legs, dropping to her knees to hug him, hold him, order him to put his clothes on, packing him back downstairs with her, back to the waiting cab, off to the airport at once, that minute, and onto a plane back home, to warmth, humidity and palm trees, and rest.
I am sure it did not happen that way, the way it would happen in an exploitative TV movie or terrible melodrama from the '50s or early '60s. I am sure it was both simpler and more complicated. I am sure more people were involved. I am sure it was worse than I can imagine for my aunt.
And then when she -- they -- got him home, got him set up in an apartment of his own for some reason, on the seventh floor of a building somewhere in or around Miami, he jumped out of it and died.
I am not so sure it's accurate to say he jumped, but I will never know. Did he jump, really? Did he perhaps fling himself from the window, leap from the balcony, if there was a balcony, or simply fall? Tall, round-faced with a tendency toward chubbiness, with groovy glasses and the same bad '70s haircut at both his weddings that all the men had back then, maybe he was just a klutz like me. Maybe he tripped. Maybe he was dizzy from all the meds and simply took a misstep.
Sometimes I wonder how bad he felt, how constantly. I wonder about the precise measure of his pain. I have heard that people who survive suicide attempts of this nature invariably report regretting their choice at some point on the way down, so naturally I wonder if P had regrets.
My mother, of course, is the other immediate relative who committed suicide. I know I've mentioned this here before, and apologize for perseverating.
I think it happened ten or eleven years after P left. They say that a suicide in the family is likely to be copied, because if there is already depression or other mental illness, or even just some kind of intense emotional situation, others will see that suicide is possible and think of it as a viable choice where they might not otherwise have done so. My mother, though, according to my sister who has read the journals she left behind, began planning her suicide when she was twelve years old, long before her nephew, my cousin P, was conceived. I wonder if my grandmother, repeatedly telling my mother (according to my mother) throughout her childhood that she'd never wanted a second child and wished my mother had died at birth, contributed to the ideation.
Regardless, she took a long time planning it. A very long time. And she talked about it for years, for decades. Once I lived on my own, I'd get calls in the middle of the night and have to talk her down for hours. She told me all the ways she'd researched, that she'd never cut her wrists because it would spoil her "pretty little hands," that you couldn't trust drugs. Two weeks before she died, she showed me the pretty little gun she'd bought and kept in a case in the trunk of the Seville she'd been traveling around in homelessly, the gun she kept for "just in case."
She shot herself in the mouth at sunset, at Lover's Point in Pacific Grove, a week after I'd thrown her and my then-husband out of my house on the same day. She left behind a ten-page, hand-written obituary which was never published (and I can't imagine she really thought it would be). A week after that, I received in the mail ten lottery tickets and a note from her saying only, "Be happy."
I wonder sometimes what she felt like putting that gun in her mouth. I wonder if she felt sad, afraid, if her body felt wracked with the physical pain of grief I felt (along with anger and strange, guilt-inducing relief) upon losing her. I wonder if she was crying, or if she was actually a little happy and maybe relieved.
I wonder if she doubted for one moment that this method, this method she'd planned and researched for so long, would work. What if she survived?
She didn't. The research paid off. One shot, and there wasn't even an exit wound.
And I don't know what she felt with the gun in her mouth, and I can never know. But I know that even in my worst pain and deepest fear, I never felt that bad, bad enough to do that. And though I have a love/hate relationship with life, like I suspect every honest person has to admit s/he has, even the most passionately in love with life among us, I have not hated it long enough, intensely enough, or consistently enough to plan such a deed.
I have undertaken self-destructive behavior in my life. I smoked for 22 years. I married wrong. I took myself off on ill-funded and ill-planned adventures on the basis of emotional outbursts and nearly lost my life countless times as a result. I have, from time to time, wished I could die, or rather, rest, or disappear. But I am not bipolar, and I am not suicidal.
My boyfriend, my true love, thinks I have a death wish. Or something. He hurts because he thinks I don't love him -- or myself -- enough to want my own life. Sometimes in the depths of my worst pain I say it's true, even though it isn't, not in any sustained way, not for more than some brief span of hours or days, and I have become far too sensible to act on impulse most of the time now. I am grieving for my cats, and I am having a hard time focusing my desire to live without them, but I do love him, and I do want to live for myself as well as him. I think so, anyway. It's hard to admit that I want to live sometimes, because it feels disloyal to everyone I've lost, feline, human, everyone. But it's true; I do.
Other people I've met sometimes say they think I am suicidal, too.
These conclusions, my boyfriend's, some close friends' and perfect strangers', largely arise because of the way I manage my metastatic malignant melanoma, or rather, the way I don't really seem to manage it at all. I eat tons of organic produce and drink teas made of plants known for their healing properties. I avoid chemicals. I try to live every minute of my life as fully as I can. I try to make most of my time not about being sick. I actively compartmentalize.
Incidentally, I was in fact able to keep my disease in apparent remission for six years after diagnosis eating a largely raw, mostly vegan, organic diet and getting plenty of daily exercise by walking everywhere while living in California, but then we moved to Massachusetts, to a town which is known as a sort of cancer cluster, which had been polluted by BASF (there was a settlement) and which contains a then-active Air Force base and civil airport just blocks from where we were living, none of which anyone told us about before we signed the lease, and no, it wasn't obvious to an outsider though afterward there were many mornings when I could taste benzine in the air and thought I was imagining it.
My cancer reappeared two months after we moved to that town. Incidentally. But I digress.
Whenever something has gone really bad, really obviously bad like one or more visible mets (at first; I gave up on that, though for reasons I will explain) or like accidentally popping a plum-sized tumor I already knew I had, the one that turned into the ulcerated and infected grapefruit-sized tumor that ended up costing me my leg, I have resorted to medical assistance. But that's it.
I have categorically refused chemo. Can you blame me? Chemo sucks, and it really doesn't work for advanced or high risk cases of melanoma. ("Advanced/high risk" in my case originally meant big enough and old enough to have probably already invaded my lymph system, and whaddaya know, it had.) The general public is ignorant about melanoma, however, as, disturbingly, are most of the people charged with treating melanoma patients. Once a woman who had survived breast cancer told me that if I wasn't doing chemo I obviously didn't love myself very much. My boyfriend, even now, even after all he's read on his own and all he's heard doctors tell me, and all I've said and cried and screamed at him, believes this, too. He blames me for the state of my disease. He blames me for the loss of my leg.
Do not be angry with him. He is a good man who loves me, and these are treacherous waters.
You can be angry with me if you want to, but be warned that I will not care. I have made educated choices, and taken terrified gambles. I own my responsibility as well as my luck. You might have done differently. You cannot say with any certain knowledge that your life would be better as a result.
The first doctor who proposed chemo to me, when I was in my 20s and newly diagnosed with a Clarke's Level IV tumor almost the size of a golf ball that stuck up above my skin the thickness of five quarters and had gone all the way into the fascia of my calf, had practically leered at me while admitting that they didn't really have good numbers on this kind of treatment but that "We like to get young, healthy people to try them on." He showed me statistics in a big book indicating that people with my diagnosis who received no treatment had a 20% chance of surviving five years. I ran like hell out of his office and never went back.
All these years later, I now live with someone who loves me deeply. But he is offended that I keep refusing treatments. There are so many things to try! Why won't I try them? Why won't I try something? Why did I refuse arterial perfusion of some form of interleukin and/or interferon eight years ago when I had my third or fourth detected met removed sloppily by my third or fourth surgeon who was so intimidated by me that when he conceded to my insistence upon local anaesthesia for the procedure he had a nurse come in to talk to me and distract me while he was working, who kept me waiting for surgery for an hour with an IV badly placed by a patronizing and apparently drunken elderly Teuton, who was really more of a breast cancer guy, and who had proposed the treatment -- to be administered by whom, exactly, never being made clear? Why, when I found out that this surgeon hadn't gotten clean margins on his first try, didn't I rush back into surgery for another wide excision and skin graft under general anaesthesia like I'd gotten for the initial lesion and had expected to get with the second met only to be told by the Great God of Dermatological Surgery at MGH and several of his supporting cast that they "didn't like to do that anymore"?
For this man who loves me, my true love whom I also love dearly -- yes, more than myself, I admit it -- I have downed thousands of dollars worth of shark cartilage from Canada somehow infused into little glass vials of liquid that had to be kept very cold at all times or lose their potency. (I stopped that after a few months. I secretly thought it was crackpotted, and anyway it quickly became too expensive to sustain.) But I will not subject myself to the systemic poisoning that is chemotherapy, not for anyone, not unless I get some kind of numbers that tell me I should. Why? Because my own research tells me it doesn't work, not on people whose disease is as advanced or high risk as mine was upon diagnosis -- not that there are very many numbers on this. I think this is a wild hare that people need to stop chasing, at least for disease like mine, not that there is a lot of disease like mine because people are getting better at catching this crud early, which really does make a difference. I think that melanoma is genetic, environmental, systemic, immunopathic. I know that it is sneaky, that it lies seemingly dormant for years, that it metastasizes at a microscopic level through the lymph system, that it is metastasizing through mine as we speak.
I am aware that recently someone discovered a genetic marker carried by a large percentage of melanoma patients, and that if I carry this marker, systemic therapies developed as a result of this discovery may help me. I am aware of research into vaccines made from a patient's own excised melanoma tissue that might be developed to help the patient's body cure its own disease; this research, or some form of it, has been going on since before my diagnosis, and I hear someone in San Diego has gotten a big grant to develop some new ideas along this line, so I asked for some of my last excised tumor to be cryogenically preserved in case it proves useful to me some day. (I don't know if any was. I don't know who pays for something like that, I had crappy insurance at the time, and I never saw or was able to interpret any mention of it from any of the bills.) I am aware of research into angiogenesis inhibitors and their effect on melanoma; I even volunteered to be a study subject for Dr. Folkman, but was never chosen.
I am also aware that only 15 to 20% of high-risk and advanced melanoma patients who have received even the most promising chemotherapy in studies showed any response at all, and that chemo drugs are deadly poison. I have a sensitive system; I have terrible reactions to almost all drugs. I am not willing to be sick for what might turn out to be the rest of my life on the off-chance that it might be prolonged a few months.
This is not the same as being suicidal.
I am aware that nowadays most people whose initial diagnosis includes
the designation Clarke's Level IV are now deemed to have a 55% chance of surviving
five years. I was diagnosed 18 years ago, and I'm still here. I've given up a leg; I've been misinformed and delayed, belittled and patronized, manipulated, mistreated and just generally poorly handled to the point where there are almost no doctors or nurses that I trust and I am terrified to ask any doctor for help even when I'm in severe pain from something that probably isn't even related to cancer. But I'm still here. My chance of survival seems to have nearly tripled. And I haven't wasted my time.
But people don't understand. They see other cancer patients going to the doctor all the time, getting "treated," suffering god-awful side effects, dying even, but trying, trying something. They project that this is what they would do, that they would "fight with everything [they]'ve got." They don't understand that I feel I am doing just that, but that I am trying to do it intelligently, cost-effectively as it were. They don't understand that doing something just for the sake of being proactive can have fatal consequences, consequences like damage to the body's ability to heal itself that can prevent a meaningful cure should one come along someday.
I want a meaningful cure. That's because I'm not suicidal.
I also want whatever life I have left to be spent mostly on doing and making, not suffering.
I live in a bit of fear, it's true, but not all the time. It flares and recedes around specific events. My screamingly awful left-sided mittelschmerz has gotten so bad I can't hide it anymore; I can't even walk for five days out of every other month. I'm afraid to go to a doctor and find out why and listen to treatment options. I'm afraid of the process of diagnosis, of having my time stolen, of being told wrong things and sent down wrong paths, of sitting in waiting rooms at overextended facilities, which is all of them now, waiting, waiting, waiting, and of the torturous process of finding people competent to help me who also aren't a$$holes. I'm afraid of being forced to make sickness my whole life.
Every time I get the flu, my boyfriend is sure I'm dying -- and honestly, the thought crosses my mind, too. A little. He's also mad at me because I don't have insurance and refuse to put us in debt just to confirm that I only have flu or whatever it is this time or that time, but I'm trying to fix that. I've applied for MassHealth. Wish me luck.
Meanwhile, every time I get sick, he yells at me. He blames me. He blames me for not being covered; he blames me for not being well. He blames me for my fear of asking for help. He broods and stomps and storms, even while he's caring for me tenderly, until finally we fight, and yell at each other, threaten to leave each other, and at last I cry. And then he seems to snap out of it -- for awhile, until the next time.
This is not an abusive man. This is the pressure on a generous and loving man of living in America with someone with a chronic disease which cannot be cured yet, with her own very strong, informed ideas of what should be done about it, her own fears of mistreatment by medical professionals based on past experience, and no financial resources of her own at age 44. This is what that looks like on an intimate level.
And even when I get coverage, hopefully from the Commonwealth of Massachusetts, hopefully sometime soon, there still won't be anything to do about my melanoma except cut it out every time it interferes with my ability to live, for as long as that remains an option. And I still won't know where to turn when I have vicious, searing pain that might be cancer or might just be hormones or might even just be a flippin' gallstone for all I know, but at least, for the man I love, I'll be able to run to the ER when he can't stand it anymore instead of trying to hide the severity of my own physical suffering while watching him disintegrate into a state of abject fear and screaming resentment.
I don't know what will prove a meaningful cure for me ultimately. Progress is being made all the time. For example, it's been discovered that a PET scan can reveal melanoma metastases, something which was not true or at least not available for more than 20 of the years that I've had this disease. A PET scan taken when my initial lesion was diagnosed may have saved my leg years later by identifying lymph nodes that had already been affected. Or maybe it wouldn't. It's a very sneaky disease, and I had had the lesion a long time by the time I decided to visit a dermatologist.
The lesion started one summer from a scab I picked at after cutting a mosquito bite while shaving my legs. I was 16. A pink lump the exact size, shape and color of the rubber eraser on the end of a pencil developed where I picked so relentlessly. It didn't interfere with my modeling career, such as it was. Every time I banged into something it bled, and once in Alaska, I accidentally cut half of it off whacking into a sharp, unfinished piece of wood. It bled furiously, and then doubled in size, and never really healed after that. Still, it was another five years or so before I was so disturbed by it, the size, ugliness and messiness, and also happened to have a job with insurance and a stable living situation, that I found the time to go see someone about it. And then the doctor who took the biopsy never called me back. I ended up calling him back two months later, and that's when he called me in for an appointment he kept me waiting two hours for and told me the news.
The year that lesion grew on me, I not only obviously suffered questionable personal hygiene like a typical teenager but had been badly exposed twice to Chlordane, once at work at my early morning job where I watered plants for a nursery (for pleasure as much as cash), and once at home when my father sprayed for ants. It made me so sick I had to go to bed. My father made it clear he felt I was dramatizing.
Neither of my parents ever developed cancer. My mother's autopsy revealed benign tumors in her liver, but that was it, and my father is thought to have died of heart disease. He is reported to have died in his sleep toward the end of his second marriage. If my stepmother secretly smothered him with a pillow, no one has felt any urge to prosecute her for it.
My sister has developed some kind of cancer in her eye, and then there was my long-smoking aunt who gave up her lung. Still, not a lot of known cancers in direct line to me.
Lots of teachers at my high school, a few blocks from the house where I grew up, had cancer. Several of them died while I attended classes there. Some of them smoked. Some of them were health nuts. And every spring the school district would have men tar the roofs and spray pesticides while we were in class, and every once in awhile big rats would scurry across the campus.
I draw no conclusions. I just wonder sometimes about the health of those rats.
And I want to make it clear that though I have made very particular choices for myself, I draw no conclusions about melanoma treatment in general. My choices are my own, made to suit my specific case based on information I've gleaned for myself or had passed on to me by others over years about my specific condition. If you are suffering metastatic malignant melanoma and doing something different about it, I have no advice for you. If you are happy with your treatment choices, I am happy for you. Different people respond to different things. Different people need different kinds of options.
I just wanted to describe what it means to have what I have and be who I am, what it means for me and what it means for people who love me. I think there might be others like me in some way out in the world, either by choice or by virtue of factors completely out of their control. Studies of survival and other consequences don't really track people who don't go to the doctor. There are a lot of reasons not to go to the doctor.
It's not easy. It's not hard like living with a disease for which there is a life-sustaining but physically ravaging course of treatment. It's its own kind of hard, hard on the mind and hard on relationships. But it's not so bad that I want to kill myself, either, not even kill myself trying to act more like a conventional, iconic projection of someone who wants to survive just to satisfy other people's need to see me seeming to care a little more.
I couldn't care more if I tried. I'm very much hoping to keep living for quite some time, actually. I have a lot to do, many plans, countless projects. I don't want to get more cats, because I don't think I'm going to live another twenty years, because I think it's statistically unlikely. That's not the same as not wanting more animals, and it's not the same as not wanting another twenty years. I just don't want to be irresponsible.
I'm smart, I'm strong-willed, I'm loving, and I want my life. I just only want it on my terms, even though the very act of defining those terms causes pain to people I love. I do think that I view life as something only worth having on certain terms because I come from a family where some people have chosen suicide, a family where it's not all that rare for people to opt out of life altogether. Their cases were very different from mine, though, and I don't know if either of the ones I knew ever actively defined terms under which they would be willing to keep their lives.
I am willing to keep my life, nay, outright, passionately desirous of keeping my life as long as it remains my life, my real life, a life of love and art, a life made of life where I can accomplish what I want to accomplish, where it's not all about pain and sickness all the time.
I've said so before. I mean it.
Now I'm going to copy Sognatrice, because I like the idea of giving flowers with awards. So here are some peach blossoms on a free tree I planted next to the road. With it go my sincere thanks to everyone mentioned here, and more.
My first resin experiments are setting on the kitchen counter. I'm not supposed to touch them for 24 hours, and then after demolding them I'm supposed to cure them in the oven for six hours before working on them further.
I am also making smaller, more colorful jewels using tin candy molds. My desire to touch them, to fuss with them, to see if they are setting properly and if I will be able to get them out of the tins even though trying now wouldn't be a fair test is overwhelming.
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