The terror of words

Sheryl Crow, Lance Armstrong, Suzanne Pleshette, Farrah Faucett, Dorothy Hamill, Elizabeth Edwards and also me, Elizabeth Madrigal. So what do we have in common?

A very thorough acquaintance with words like 'survival', 'after a long battle', 'chemo', 'radiation', 'Zofran', 'port', 'tattoo', 'surgery', 'margins', 'muscle wall', 'metasticized' , 'clinical trials' and for some, the word 'inoperable'. So many of those words seem to jump off the page when written, and when spoken I still hear them like shouts.

My original doctor had been quite facetious when I anxiously questioned her judgment on the third visit I made for the same nagging concerns. She calmly reassured me, commented I was a bit emotional and offered to check my hormones. When I suggested my symptoms might suggest something more ominous, she became visibly annoyed.

Her exact words, delivered with a condescending snicker, were, "How many second opinions do you need for a hemorrhoid?"

My answer today alive and recovered is, "Obviously at least one more."

I had known for some time that I needed a new doctor. Somebody who would take me seriously. We'd been looking for a year but our area, like most of the country, has a terrible shortage of medical personnel. For every physician recommendation we'd gotten, those practices were closed to new patients.

One day after I confided in my daughter she surfed the Internet and found several sites that addressed the symptoms of colorectal cancer. The most consumer-friendly of these stated the following:

If you have any one of these conditions, see your doctor immediately for a screening procedure known as a colonoscopy:

1) You are 50 years old

2) There is a family history of colorectal cancer or colorectal polyps

3) You have rectal bleeding

4) You have odd and/or changing waste elimination issues

5) You have lower abdominal pain.

Not only was I fifty years old but my father had had colorectal polyps removed in his mid-forties. I knew this only because my sister had driven him to the hospital for the procedure. As colorectal cancer generally takes five to ten years to develop from a polyp, removing the polyp during the screening procedure can often be the cure. In his case he never developed cancer. His brother, however, skipped the procedure and died of it a year after I was diagnosed.

Of course, once a polyp has morphed into a pre-cancerous or cancerous form, things become much more complicated. One tiny cancer cell escapes into the blood stream and it is the recipe for disaster. When I was finally diagnosed with colorectal cancer on December 15, 2000, I had received a year and a half of misdiagnoses, seemingly very common in the oncology business. It had taken me a full year before I went to the doctor in the first place, so the tumor had been growing, and I'd had symptoms, for two and a half years by the time it was detected.

When my original doctor was 'shocked' (her words) by my diagnosis, perhap it was because she had discouraged me from seeing a specialist. She sent me home three times with general reassurances about my health. Now that I know more about real life and have almost forgiven her attitude and and have forgiven her mistakes, it makes some sense.

Not every doctor is going to take a pre- or peri-menopausal woman seriously. I guess they figure we'll eventually overcome whatever seems to be bothering us by next month. The menses, you see, are the cause of all sorts of mysterious discomfort, pain, bloating, anemia, depression, mania and who knows what else. 95% of the time they might be right. It is the 5% that I fell into.

Many people might be shocked that someone like me would disclose being a cancer survivor publicly. After all, beyond personal dignity, what about my health insurance? Yes, that is a concern in some states, but where I live in Washington state, pre-existing conditions do not count against you as long as you maintain continuous insurance coverage. The carrier cannot rate me either, except for my age, once I have the policy. (In other states the protections are less progressive.)

People were also shocked that I was participating in a DNA study, as many people are worried somebody might 'get' their DNA, but the boat has left that dock too. Anybody who has had a mole removed, a Pabst smear, or a tumor has their tissue in a tissue bank somewhere. The hospitals and labs don't throw those tissues away. Many of these body tissues end up in research facilities all across the world. Yeah, it is creepy, but I am more than happy to donate my tumor to scientists who might try to find a cure.

If I Google myself after I publish this article to Gather, I am sure it will show up, but honor in life is a funny thing. Maintaining my own privacy doesn't measure up against somebody else's life. I have written about this subject before and believe I have convinced at least a few hundred people to get screened for colorectal cancer. I hope the number is higher as colorectal cancer is an equal opportunity disease, gender blind and the age when the average person begins to grow polyps is usually the late forties. With as little as three and up to ten years for a polyp to grow into a deadly tumor, those screening colonoscopies are pretty important.

The different ways people treat cancer survivors can be interesting, however. You know that 'silver lining' we hear about from all the enduring optimists? My children initially treated me like The Madonna and no matter what I did or didn't do, I got a pass. They hoped I would live and luckily I did.

After my diagnosis many friends had no idea what to say to me as the entire time I was sick I looked like the picture of health. For a few months I stayed home and in bed while recuperating, as my treatment was very debilitating, so when I reappeared in public nothing had really changed externally. I didn't lose my hair either, as the chemotherapy I was given did not have that side effect, which further confused people. Occasionally someone would talk to me while trying to sneak peeks of my breasts. They didn't know how to ask what kind of cancer I had or how serious it was or where it was, so they guessed. (Bad idea, by the way.)

I wanted to say, "Yes they still match. Look lower. Much lower. Hey, want to see my scars?"

Okay, so mooning people wasn't the appropriate reaction, but you can understand I didn't know what to say to people either. New Englanders, transplanted or not, are often intensely private people. As I was the first of all my friends to get cancer, they were curious the way people are at the scene of an accident. Ultimately I decided that my privacy was unimportant compared to the suffering I could potentially spare others, if I convinced them to get screened. I wasn't the first one out there on this bandwagon, however.

Katie Courick, who underwent a colonoscopy on television eight or nine years ago to encourage others to get screened (after her 44-year-old husband died of colon cancer) was my inspiration. I might not have pursued that second opinion had her celebrity not been so star-quality. I would most certainly be long dead by now. Hmmm.Isn't there something about if you save a person's life you are forever responsible for them? Or was that responsible to them...?

The body eventually mostly heals, but for months after my cancer treatment ended I still scanned the obituaries in an effort to reassure myself that mostly old people died, not someone barely fifty. Whenever I found a birthdate equivalent to mine, I would feel terrible anxiety overcome me as there were always those terrifying words. "In lieu of flowers, donations can be made to the _ _ _ _ _ Cancer Society".

My exuberant joy in life desperately struggled to flicker while I was in constant, burning pain for almost a year as I recovered from the radiation burns. People I knew whispered to each other, she has definitely changed. Yes, I had. Gone was that inner faith that bad things couldn't happen to me. After all my family had heart attacks and strokes; I expected my death to be quick and efficient, not with all that suffering.

Perhaps I knew in my heart that my symptoms were serious, as I pursued my diagnosis after being told several times I was fine. Then again, I cannot describe the actual shock of having my fears confirmed, when the doctor said so softly, "There is a tumor. The surgeon and the radiologist are going to come in to speak with you both." Of course I wept as my husband put his arms around me, allowing me to hide the shame of my tears. Then he whispered in my ear, "We are going to get a second opinion." God bless him, he didn't believe them. He believed in miracles. Perhaps that is how I became one.:)

It seemed so cruel at the time, but now I see it as a part of life. The body is a transient vehicle, or perhaps some prefer to call it a temple, for the soul. Mortal is exactly the opposite of immortal, and the former remains the human condition.

Within a few weeks of my diagnosis I was over feeling sorry for myself and although still very sad, I wanted to take action, any action. There is a black hole between initial diagnosis and treatment, and while I was in it I began a tiny campaign to get everyone I knew screened. After all, they didn't find my tumor until my third screening! Certainly others in my broad acquaintance were growing tumors as well.

My aunt emailed me with a pious reprimand about the 'oddness' of putting something as personal as a cancer diagnosis into an email. I had included my telephone numbers and address, and the irony of her method of response wasn't lost on me. I thought she of all people would be compassionate, as her own daughter had survived breast cancer while in her early thirties. I was wrong.

People are weird when it comes to somebody else's daughter. It may have something to do with a feeling that lightening doesn't strike in the same place twice, so perhaps there is some relief when other people get sick and die. You and yours dodged the bullet for now, so best not to associate with the ill or suffering. Sort of a 'save your compassion for your own kids' mentality.

I felt like the initial diagnostic arm of the medical system had let me down, and so I was trying to scream 'fire' so the people I cared about could save themselves. Instead of being grateful, my extended family acted like I had suddenly become overly neurotic. One relative actually said, "Just because you have cancer doesn't mean I do." It was a weird reaction, I thought, as I was just suggesting she get screened early, like she would have gotten a mammogram if it had been breast cancer.

I was expected to understand they were unable to 'deal' with my diagnosis as the news was too difficult for them. They assumed I should forgive them for acting like nothing important was going on. "Oh, I waited eight weeks to call, because I thought you said your treatment would take six weeks." I realized then that no matter how often you call, write or visit, there is no substitute for living close to family if you hope for a close relationship with them.

Imprinted and unchanging as my childhood memories were of them, none of them related to me as anything more than a foolish girl who took off for California with nothing but her name. They were wrong then, too. I still had $80 left after I bought my airline ticket.

So back to May of 2001 when I finished with the chemo, radiation and surgery. Everyone around me started to relax, as they assumed if I wasn't dead I must have been cured. Their attitude was easy because they hadn't had cancer.

They didn't understand that one wild cell left trying to kill you is enough to do the job and until there are millions of them, nobody knows if one exists. Fear steals any enjoyment in life while you wait to see if you have a future. You make only short term plans and don't talk about next year or the year after or when I'm sixty-five. Death and dying should have been scarier than survivorship, but they were only the end of the disease not requiring the energy, determination and resiliency of the actual struggle.

Anyway, once I lived I realized I wanted to go through life with as much impact as I could. I don't spend time or energy with people I don't like or doing things I don't enjoy and I lack any desire to cultivate my ego or spread untruths. I see no purpose in pursuing revenge, and I have no desire to hurt anyone else. I want to do no harm and I would love to do some good.

I can also say things plainly and I don't get embarrassed . My modesty seems to have been radiated along with my tumor, so here goes. Please schedule your colonoscopy for the people who love you. Take the easy road and save yourself from enormous suffering by getting screened early and consistently. Even if you have to put the cost on a charge card initially, do it. Your life is worth it.

I can't tell you how full and rich my life is these days, but as they say, every day above ground is a good one. Enjoy it.