Usually we associate powwows with singing and dancing. That is, of course, is the primary focus of powwows. But many powwows serve another purpose. It’s not unusual to observe healing songs and ceremonies for individuals during a powwow. Or there may be memorial songs for people who have passed away. In some cases, an individual may give testimony on a particular issue. To this extent, powwows provide pertinent social interaction and dialogue within Native communities that goes beyond singing and dancing.
The Powwow Colon Cancer Initiative is yet another example of bringing a much needed dialogue on an issue that deeply affects Indian County. Cancer is the second leading cause of death among Native Americans. The overall number of Native cancer deaths has increased to the point of nearly overtaking the leading cause of death, which is heart disease. The leading causes of cancer deaths among Native men are lung, colon and rectum, prostate, liver, and kidney; for Native women, lung, breast, colon and rectum, pancreas, and ovary. In regard to colon cancer, colon cancer is the second leading cause of cancer death among men and third leading cause among women. It is for this reason that the American Indian Cancer Foundation (AICAF) established the Powwow Colon Cancer Initiative. The initiative is a short term project that ends in June (2018). The grant from the Minnesota Department of Health allows AICAF to travel to six powwows in Minnesota. I was chosen as the spokesperson because of my role as a cancer advocate in Indian Country. My role as an advocate stems from my own experiences as a colon cancer survivor. In giving testimony, I not only talk about colon cancer but cancer in general. For me, colon cancer is the microcosm of the macrocosm that is cancer. And that is what cancer awareness is all about. As a spokesperson, my testimony is a story that I’ve told many times before. My cancer journey began in 2013. After my cancer surgery, my cancer was assessed as Stage I colon cancer. As such, I didn’t need chemotherapy. Stage I has a five-year survival rate of 93%. That was great news. I thought I had a brush with cancer, nothing more. However, I was considered a high-risk cancer patient and I had to have annual CT-scans for five years before I could even consider myself as cancer free. My third year CT-scan revealed a recurrence of cancer. A lesion was located on the left lobe of my liver. In November 2016, I underwent surgery to have the lesion removed and I went through 16 rounds of chemo. I went from the little league of cancer – Stage I in 2013 – to the big leagues of cancer. One of the things I talk about is why I got cancer. What was the causation? I don’t know. It’s most likely a number of factors. But I feel that diet plays a large role. We were once a healthy people. We ate healthy foods. But the establishment of reservations changed our diets drastically. We went from eating wild game to eating domestic animals. It was only after dietary changes do we see the development of cancer among Native peoples. My own screening nearly came too late. There were early symptoms – black coloration of my stools, headaches, and bone-weary fatigue. I knew something was wrong. But I was hesitant at first to go to my doctor. And that’s because in the back of my mind I knew I had cancer. The fear of cancer was embedded in my mind after my father died of stomach cancer in 1972. Hence my hesitation. But I knew I had to get checked out. I owed it not only to myself but to my family. Based on anemia and black, tarry stools, my doctors referred me to a specialist for a colonoscopy U of M Fairview. The colonoscopy revealed a tumor the size of a lime located in my ascending colon. The rest is cancer history. I cannot overstate the importance of colonoscopy/screening. Screening caught my cancer in time. On the other hand, if I had gotten screening at the recommended age of 50, I wouldn’t be talking or writing about colon cancer. However, because I didn’t get screened at age 50, a polyp became pre-cancerous and, by the time I reached age 66, it became a full-blown tumor. Fortunately, it was caught in the early stages. Colon cancer is preventable. If found early, nine out of ten people survive. I’m one of those nine people. That doesn’t mean I’m cancer free. I have years to go before I can make that claim. So, that is the gist of my cancer testimony, or what I call my cancerlogue. The Powwow Colon Cancer Initiative provides me with the opportunity to bring an awareness of cancer. My example not only serves to underline my experiences with cancer but it also reaches out to others - survivors, caregivers and survivor families - who deal with this deadly disease. Whether it’s me or someone else, we need to hear more about this disease. The word should not be a stigma. Choosing not to listen will not make this disease go away. Choosing not to listen will only increase the cancer rates among our people. Those of us who speak about cancer do not bring a message of death – we bring a message of life and hope. And therein lies the reason for our survival and the survival of our people.
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Spider Woman, Carl Ray, 1974As I approach my six-year cancerversary (April), I sometimes wonder where my life would be if I hadn’t been diagnosed with cancer in 2013. Would I have been writing? If so, what kind of writing? Writing is one thing that I know and I’m sure I would have been pursuing writing in some capacity, and the focus would have been from a cultural mindset.
But then along came a asabikeshi (spider). This wasn’t an ordinary asabikeshi – an arthropod with eight legs. Rather, it was a mutated cell with spindly tendrils whose venom was poisonous. Interestingly, in my Ojibwe culture, asabikeshi also means cancer. A very apt name for a deadly disease that spins a deadly web in our bodies. How did the elders know that cancer cells looked like a spider? That I can’t answer. What I do know is an asabikeshi took form and shape in my colon. It was removed surgically. Then in July 2016, an offspring reappeared on my liver. It too was removed surgically. In addition, 16 rounds of chemo were used to destroy its web. Presently, the web remains clear and I am in remission. I am now entering my sixth year as a cancer survivor. Certainly, my outlook on life has changed. As a survivor, I don’t see myself as a victim. Cancer is a part of me. It is a spirit in the shape of a spider that has taught me many things. And rather than playing the victim, I see the asabikeshi as a messenger, one sent by Gichi-Manidoo (the Creator). As odd as it may sound, I respect the asabikeshi because it is me. And I offer it asemaa (tobacco) because it is a spirit that needs to be appeased. But make no mistake; the asabikeshi is not my friend. It is an inner enemy whose sole purpose is to destroy me. So it is a battle, but one in which the enemy is to be respected. And therein is the answer to my question of writing. I now write about cancer. I write about my experiences because that is what has shaped and formed me from the time the asabikeshi wove its deadly web in my body. In writing I seek to inform what others may face on their cancer journeys based on my own experiences. Understanding the nature of this disease brings hope. And hope is an essential weapon against the asabikeshi. |
Robert Desjarlait
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