I said I would write what it felt like to be dying.
Oddly, it doesn’t feel like what you would expect it to. At least, not for me. I don’t feel horrified and anguished that there will be no more Sirenita. Sirenita was a certain organization of molecules, energies, spirit, intellect, memories, skills -- all available on a menu. When I die there will be another Sirenita, or someone very much like this Sirenita. The world will not be the less for it.
The ones who must live with this agony are the ones who love me. For them, the unique configuration that this Sirenita is something essential and irreplaceable. I have never yet cried for myself, for my one year of respite from disability before becoming fatally ill. For my hopes, for my plans, and certainly not for the creature who happened to be me.
I was the child of immigrants. My father died when I was 9 of pancreatic cancer. I didn’t know then, I didn’t know until lately, that it is a hereditary cancer.
The very early part of my life was easy, charming. My father took care of my mother, who was yet more ADD than I was. He kept our life organized, he kept us financially comfortable.
When he died, everything changed. I was at an age where sheer brains was no longer going to serve me as a disguise for my ADD. As a small child I would locate the kid in class who was the wierdo, the misfit, and I would make friends with that kid, out of what I think could only be pity, because I often didn’t like the kid myself.
After my father’s death, and early puberty, I became “bad.” I forgot things. I lost things, I didn’t do homework. I was an underachiever. The criticisms rankled. I became defiant. The kid who chose a geek to befriend was now labeled bad.
I struggled through it for many years. I figured out how to manage it. I became successful. And that’s all I choose to remember of those early years of ADD, except when detail is handy as a help for someone else, and to show that I understand.
My life got better and better. I finished college. I eventually got jobs, professional jobs that I loved. I found my life’s partner, and we made an immediate agreement that we were not in an exclusive relationship. We remain loyal to each other 27 years later, deeply in love, and not the least bit trapped. Possessiveness had no part in our love. No sense of ownership exists.
We were poor teachers when we met. By chance, luck and by my own minor, unmerited cleverness with money, we became financially comfortable. Money, which was such a monstrous issue when I was child -- with my dead immigrant father’s massive hospital bills and our leaking roof and the clothes I finally learned to steal -- money became something that we had, to keep us secure and even help our friends a little.
Since then, I’ve learned what a good friend is, which friends suit me. And without becoming a social butterfly, I surrounded myself with quality people. In spite of long years of illness and disability, I formed two other important romantic relationships. Wainskote, who has a doctorate in molecular genetics working in scientific software, and most recently Nanatahey, a stunning autodidact whose compassion as well as fighting spirit know no bounds. No woman has ever been so blessed.
Family isn’t a choice. Loving them is. The complexities of why you feel one way toward one relative compared to another , the weight we drag around from long ago slights, those become trivial. I forgot I ever felt a bad feeling toward a sister. What I see is a golden aura around them, an aura that embraces me a little while it still can. I feel as though I’m betraying them by leaving, although that’s irrational. I howl like a lunatic coyote at the moon.
I could scream for the loss, but my instinct is to try to leave each friend and relative with the knowledge of what they meant to me. If that sounds selfless, saintly, formulaic, well, too damn bad. It makes me feel right. I’ve always been an oddball and I mean to continue.
But this is not what I wanted to write about right now. I want you to know what I did not know that might have saved my life.
Pancreatic cancer can be a familial disease, most commonly when it strikes a family member in their 50s or 60s. I happened to run across this fact while doing some research after I’d been diagnosed, and it set me back. My father having died of this disease when I was 9, I should have been monitoring for it after a certain point in my life. Yet there doesn’t seem to exist, at this moment, a protocol for testing and monitoring for pancreatic cancer as there is for breast cancer. Yet doctors know this.
My cancer was incredibly difficult to diagnose. I had cancer, but where was the origin? Symptoms indicated lung cancer, but the cytology pointed toward a female cancer.
When my exploratory surgery was complete (you know you’ve had it when they resort to exploratory surgery, when CAT scans and MRIs and sonograms and pathology and physical examination leave the doctors mystified, plus my stomach was blocked and I hadn’t eaten in weeks and needed a bypass) the surgeon wasn’t sure if the massive pancreatic tumor he found was primary, or metastatic (spun off by the original tumor). But when he heard that my father had died of pancreatic cancer, he said, “Ah!” That settled it.
So how do you prevent this from happening to you, to the extent that you can? You gene test and if you carry the mutation, you monitor quite closely. The problem at first seemed to be how to track down someone to perform this testing. And yet, astoundingly, the tendency for pancreatic cancer is in the same gene that is now well-known for indicating hereditary breast cancer. The mutation lies in the genes BRCA1 and BCRA2. While these are implicated primarily in breast cancer, it can also be traced in families with histories of a variety of cancers* as well as pancreatic cancer. I felt a moment of joy, I realized, when I found this, when I realized that while my death might have been needless, my sisters still had a chance.
Gene testing is fraught with peril. If they can afford it, which many women do in the case of breast cancer, testing is done privately so that the results do not enter the insurance company databases. If you have one relative who came down with this disease during the critical years of the 50s and 60s, as my father did, you should probably be gene tested. If you have two close relatives -- defined as parents or siblings, who came down with the disease in the critical period -- you are at increased risk, about six times higher than the average population. If you have another relative (which I might, my brother having died at 59 after having been estranged from the family) it’s a no-brainer. Get tested.
If, as is so common in the medical system, the doctors or nurses that you deal with don’t know what you’re talking about, push on through yourself. If you don’t have the mutation, you’re done. If you do, you should start an aggressive program of monitoring. I don’t know of any, but figure it out. Have frequent MRIs of your pancreas, because this disease is fast and silent.
Justice Ruth Bader Ginsburg developed pancreatic cancer years ago, and is still writing opinions from the bench. Supreme Court justices are very carefully and frequently medically monitored, and her cancer was caught by a full body scan, which almost no one receives routinely. You may have to work with your doctor, or if you encounter skepticism, you may have to find a specialist in breast cancer. This gene test is commercially available now. It’s a miracle that the answer is, in some ways, so simple.
You don’t want to die like this. I’ve had a lung collapse twice. I’ve had edema that makes me look like a painting by Botero. Edema hurts to walk on. You can barely bend your knees to go down stairs. It can cause tissue breakdown and sepsis. I’ve had days when I’ve woken thinking that I was drowning because I had a throatful of bile, and a burned stomach. An excellent surgeon created a new stomach for me because the old one was blocked and I could not eat. This stomach never really got a chance to get up and running, because I developed a small intestine blockage that cannot be fixed, or is not worth fixing. I will never eat another meal again. I live on liquid IV nutrition. I have staggered from starvation, I’ve fallen on the ground in pain, I’ve run out of a room to vomit violently.
Sometimes I almost laugh. When I mention how much today's symptoms suck, someone says, “Remember when your lung collapsed? Remember when you couldn’t walk? Remember when you went blind for two weeks from the medications for the edema, prescribed by an arrogant resident against the wishes of the attending physician?” Sometimes I must laugh; when I think today’s symptoms are the worst I’ve ever experienced, I remember what happened just a couple of weeks ago.
And yet, I would be content if one single person got tested -- a sister, to start -- and finds out they have this easily detectable gene mutation.
I admit to some frustration. I planned a real estate investment business, low end but with vision. I will never do this, though I’ve taken concrete steps. I had one year, most of 2012, with no serious disability, where my hips were replaced and my spine was straightened and reinforced, and I could walk. When you can walk, go places on your own, you can make plans. I even bought myself new clothes. I made plans to start a business, which were under way in March when I came down with the shortness of breath that I thought was pneumonia.
But for myself, tragedy, anguish -- these have no room, in my heart. I just want to die in not too much pain, surrounded by the ones I love. I want to help them find what peace they can in the time remaining. And if you want to give me a special going away present, spread the word about the BCRA gene. Save some lives.
* At this point in the piece, Cris wrote the word LIST, but never got the chance to compile the list she had in mind. I asked Wainskote to look it up, and he sent the following message:
This is the most comprehensive list of currenly known BRCA-related cancers I've found:
A woman’s lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2. Such a woman has an increased risk of developing breast and/or ovarian cancer at an early age (before menopause) and often has multiple, close family members who have been diagnosed with these diseases. Harmful BRCA1 mutations may also increase a woman’s risk of developing cervical, uterine, pancreatic, and colon cancer (1, 2). Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, and melanoma (3).
Men with harmful BRCA1 mutations also have an increased risk of breast cancer and, possibly, of pancreatic cancer, testicular cancer, and early-onset prostate cancer. However, male breast cancer, pancreatic cancer, and prostate cancer appear to be more strongly associated with BRCA2 gene mutations (2–4).
It's also important to note that while mutations in BRCA 1 and 2 have been linked to multiple kinds of cancers including pancreatic cancer, it is almost certainly the case that there are other genes we don't yet know that can be involved in familial pancreatic cancer. A "normal" BRCA 1,2 result combined with a familial history of pancreatic cancer does not necessarily mean that there is no risk -- it means that one prominent source of risk has been ruled out.
Cris Gutierrez, 61, a San Francisco writer and activist, died Aug. 4, 2013, from complications of pancreatic cancer. You can read her obituary here.