The mystery of wellness

by Elaine Klaassen

This famous poster by Deena Metzger, "The Warrior," addresses the importance of transforming our notions of what it is to be beautiful and whole. It has been an inspiration to women with breast cancer since it was made in the '70s. I first saw it at the Women's Cancer Resource Center, 4604 Chicago Ave. S., (612-822-4846), but it can also be found at www.deenametzger.com. To order a poster call Donnelly/Colt at 1-860-455-9621 or Fax: 1-800-553-0006.

The War On Disease?

What is wellness anyway? (The spellchecker, I can see, is going to tell me consistently that wellness is not a word. Why not? That is sick.) As one who has been defiantly well throughout my life, I now have to admit to (but not submit to) illness. Because it is cancer, they call it a journey, the cancer journey. Do they call it the heart disease journey? The arthritis journey? The hernia journey? I guess cancer is considered more life changing and thought provoking because it presents modern science with a great unsolved mystery; cancer patients enter into a twilight zone of conflicting, changing information which tests their beingness as nothing else can. The first thing you have to let go of is the need for certainty.

Nowhere in the world does anyone truly knows what cancer is actually about. In Susan Sontag's "Illness as Metaphor," published in 1977, she writes that many researchers assert that cancer is not one but more than a hundred clinically distinct diseases, with different cures for each. She also says the disease has been around for hundreds of years, and contrary to what you may think, is not new to the industrial age.

Current treatments are not as barbaric as they used to be, and new developments arrive on the scene almost daily. My friend Marie, in California, was diagnosed with lymphoma in 2002. Exhausted from medical interventions related to her heart disease, lupus and diabetes, it was doubtful her body could withstand the deadly chemotherapy cocktail recommended for her type of cancer. She decided to forego treatment until her body displayed symptoms so as to best enjoy her last days. While her tumors disappeared temporarily, they did ultimately return, along with symptoms, in January of 2004. By that time there was a new, milder treatment available. At the end of February 2004 she began a series of eight treatments, which appear to be going well. In the event of a setback, there's no telling what new knowledge may be around the corner.

How do we know scientists won't isolate a cancer virus? Maybe the wonderful French journalist Dominique LaPierre ("City of Joy") will write the book about isolating the cancer virus as he did about the AIDS virus in "Beyond Love." Sontag says cancer may turn out, like TB, to have one causal agent and one program of treatment.

I know a little bit about medicine because of my friendship with Marie. And I know a little bit more because my friend Alex, who has heart disease and reads medical books constantly, tells me things. When I had bad migraine headaches he read seven books about them to help me solve the problem, which I did. Now, with the cancer diagnosis, I've learned more about medicine than I ever cared to know: Early detection. Ductal carcinoma in situ. Very common. Excellent prognosis. Standard treatment is sentinel node injection and wire localization before lumpectomy to be followed with radiation.

Dr. Susan Love, a medical doctor who has written a most lovely and whimsical book, referred to as the breast cancer bible, presents the idea that cancer exists in our bodies naturally. It takes off when our bodies become weak and the conditions are right for the cancer to get out of control. This confirms my idea that I could have had cancer various times, and it could have subsided naturally each time. I've heard other people express a similar idea, the idea of cancer coming and going. When I got my diagnosis, at the end of February, I said, half-jokingly, "I went for the mammogram at the wrong time."

Dr. Love says there is a treatment concept that focuses on keeping cancer at bay rather than trying to eradicate it completely. Sontag alludes to the same idea: "Concepts have started to shift in certain medical circles, where doctors are concentrating on the steep buildup of the body's immunological responses to cancer." That resonates better with me since I always try to establish a relationship with my enemies, not that I want to get too friendly. But I don't have that Power Rangers "getemal kilemal" mentality that songwriter John Snell X captures so well in his song of the same title. It's more like I want to make my unwelcome guest even more unwelcome. (I will try to "encourage" it to leave, even though it occasionally keeps me company, by making sure there are never clean towels, there are never extra concert tickets, definitely no breakfast in bed ... I will find out what it likes to eat and make sure my pantry stocks none of those items ... )

Another way to think about it is that healing is more about prevention than cure, just like the war on drugs or the war on terrorism should be more about prevention. In other words, if the body (or society or the world community) is strong and healthy and taking care of its true needs, the enemy can't gain a foothold.

Not a Deep, Dark Secret

Once I had the diagnosis it didn't take me long to clarify that I'm not your typical American rugged individualist. I wouldn't spend weeks at a time alone on my horse out in the wilderness, amputating my own leg if I had to. I believe completely in surrounding myself with people and leaning upon them. I agree with my friend Dennis who used to say we are here to "bear one another's burdens." I don't believe in "going it alone." I learned this in Spain. One morning at 8 o'clock I was running down the steps into the Madrid subway to go to the dentist. The dentist's name was Verdugo, which means executioner, and I was pondering why someone with the last name of Verdugo would become a dentist when I ran into my friends Ramona and Javier. I said, "I have to go get my tooth pulled-it collapsed." Without hesitation, almost in unison, they said, "We'll go with you." Ramona stood next to me crossing herself and muttering things I couldn't understand as Dr. Verdugo pulled out piece after piece of my totally rotten tooth. Javier stayed in the waiting room. Later we went out for cognac and coffee and I didn't need a single pain pill. I'm sure their willingness to accompany me had everything to do with the outcome.

I tell everyone I know what's going on with me because I believe that people should look to each other for support—We're all in this (life) together. (Fortunately, owing to the number of celebrities who have made breast cancer a celebrated cause, it's easy to say "breast cancer," as though I'm talking about something that has nothing to do with my own body.) And people have been so wonderful that it's as though this disease is a blessing. I'm on every prayer list from here to Kansas. I thank everyone who is praying for my healing. My friend Sara, in Washington, D.C., says a friend of hers said breast cancer was the best thing that had ever happened to her; people rallied around her and gave her endless support. (I knew already on the day of the diagnosis I'd have to write piles of thank-you notes.)

Also, throughout the whole experience, as my friend Lucie pointed out, there will be numerous opportunities to establish rich, new relationships with people, especially in the medical community, that you otherwise wouldn't get to know. I already love my surgeon because he doesn't discount the possibility of miracles.

I also tell people about my cancer because a medically diagnosed illness seems a more socially valid form of suffering than just suffering from sadness or loneliness or bad moods. Because it's a life and death matter, it makes me feel strangely connected to humanity, more engaged in the ebb and flow of life.

Another reason to tell people is to confirm my refusal to be ashamed and stereotyped as a cancer-prone personality, a weaker, inferior model. (At the same time I do have to humbly acknowledge that I don't have the body/mind relationship down to perfection. Would I be well if I did?) I had decided many years ago that if I ever came down with a major illness I would read Sontag's "Illness as Metaphor." It reassured me, as I knew it would, in vehement language and no uncertain terms, that I was not to blame for my illness nor am I "unemotional, repressed and inhibited," as popular lore would have it. It was especially good for me to read this book because I come from a background where illness is considered dysfunctional and therefore unacceptable. Actually, it's OK to be ill as long as you have a good attitude about it. But people still "wonder" about you.

A side effect of talking to so many people about my diagnosis is that I have found out how much breast cancer is out there. Everybody knows someone who had it or has it. The frequency of its appearance almost makes it seem epidemic. The statistic I've seen is 200,000 cases per year in the United States. From what I hear, it appears that half of them are here in the Twin Cities. It's hard not to consider the possibility that there exists a conspiracy against women.

A Wellness Plan

Since it's impossible to know the cause—Could it be old computers, my sorrow over Iraq, formeldahyde underlayment in my house, old boyfriends, grief and loss, stress, anxiety, cranberries and lipstick, my grandmother's attempt during my childhood to scare the worry out of me by telling me that worrying is a sin, late first pregnancy, toxic cleaning agents, alcoholic drinks (even in small amounts)?—and it's impossible to know the exact moment when the first cancer cell divided and started growing ---you might as well just move on to a plan of action.

Almost immediately I checked out the Women's Cancer Resource Center, a wonderful place if you ever need them. I met with Katherine Murphy who helps people work on healing plans that combine alternative and the typical Western medicine. If I had a terminal diagnosis I would probably go alternative only. Because, why not? There would be nothing to lose. In my case, though, it makes sense to try to use alternative means to strengthen myself for the Western cure, but not use it exclusively.

The thing about alternative is that it's hard to do any of it half way. My friend Gail told me about a medical doctor who got breast cancer a few years ago and refused to go for the standard treatment. She developed a plan which Gail recalled as NEW START. Each letter stands for a component of the program: nutrition, exercise, water, stress, toxins, air, rest and trust. It sounds like it "simply" means using common sense to create a healthy lifestyle (no small task). Anyway, the doctor's tumor shrank and she is alive and well today. I'd like to find out who she is and read her book.

Meditation is certainly the most difficult part of alternative healing. I know a young kid who had cancer and they told him the chemo probably wouldn't even help him, he was so terminal. So he just stopped going to his doctor appointments, started meditating and changed other things in his lifestyle. He's doing well today.

If you get serious about food, it can be very involved. Many years ago I heard of a woman in Spain who was given a terminal diagnosis for stomach cancer. She gave up traditional therapies and started an intense diet which sought to feed her and starve the tumor. Since the tumor always eats first, like a fetus, the host body has to eat enough to nourish itself after the tumor is done eating. All I remember is that she ate no animal protein after 4 o'clock in the afternoon. She survived.

Alternative healing seems to require a combination of intentionality and letting go at the same time. A man with a terminal diagnosis decided to spend his money on a trip around the world instead of on treatment. He met a woman, fell in love and moved with her to Buffalo, Minnesota, where all signs of cancer in his body disappeared. She wrote a book about it.

My brother-in-law Jim says that whether it's love, food or meditation that effects the cure, the common factor is the intentionality of the patient; the patient stops being passive and takes charge.

The first thing I did to take charge of my own situation was cut down my work load. I'd known for a long time I was overextended to the max. The diagnosis made it very easy for me to write down my eight different jobs and decide which ones to give up. Although I didn't hate any of them, and actually loved all of them in some way, it seemed clear what to do. The one I love the most pays the least and the one I love almost as much pays the best so those were obvious keepers. And then I kept one I like a lot that pays pretty well. There's still a lot that fills my time what with doctor and counselor visits and reading books about cancer care and so on, but my schedule is less tight and I've had the chance to relax and hold a couple of life-affirming, healing parties, read a spy novel (John Le Carre's "The Constant Gardener" is both an indictment of corporate greed and a beautiful love story), go for some hikes and spend a full day making a pair of pants. This was all in preparation for the "cure" ahead.

The greatest thing I did to prepare my soul was go to St. Mark's Cathedral to hear Johann Sebastian Bach's "Mass in B Minor." From the first dark and poignant chord to the final note two and a half hours later, the music was passionately alive and performed with great ease. I had forgotten a lot of it from the record I used to listen to and was amazed especially by the two utterly mysterious parts in the Credo, about the virgin birth and the crucifixion, before the glorious "Et resurrexit" chorus. Powerful contemporary installation pieces depicting the stations of the cross placed throughout the church tied the suffering of Christ to the suffering of the world. They told me that, tragically, Jesus continues to be crucified. By the same token, I realized, He also continues to be raised from the dead.

The image of great beauty and great love and this great miracle went with me as I endured the prescribed procedures and surgery. Of course, as would be expected, I was the center of the universe on that day; my own particular chunk of protoplasm was all that mattered. Although I knew rationally that the chances of dying in surgery or having a stroke are pretty small, just like the chances of going down over the ocean on a transatlantic flight are slim, I nevertheless had picked out my favorite hymns and written down my wishes for life support and organ donation, etc. My fear of death, the experience of pain, my fear of physical pain and my fear that being afraid would destroy my chances of a good outcome engaged me in that uniquely mortal experience of being both body and spirit, both separate and connected.

To keep me in the larger picture, I had quite a few friends and family members with me all day (if anyone offered to go with me, I took them up on it) and it was kind of a party . We laughed a lot and shared stories and met all kinds of fascinating people.

As far as I know now, the medical outcome is positive. And, maybe because I was surrounded by my dear people, I had no nausea and virtually no pain following surgery. I suppose that could also be attributed to the fact that the medical people are very good at what they do.

From now on it's one day at a time.