On July 2, I attended the afternoon session of the Red Cliff powwow. It was my second powwow of the year and my first powwow since my recurrence of cancer. Five days later, I would start chemotherapy for colon cancer mets to my liver. As many know, dancing is a great passion of my life. I’ve danced for over thirty-two years. Dancing has provided me with a base for my thirty-four years of sobriety and it is the fulfilment of a dream vision I had when I first began my sobriety. But this year has been different. In May 2013, I had my colon resection, and the prognosis was Stage I. By July of that year, I was ready to start dancing since the recovery period was short and there was no chemo involved. And that I did. But this summer I was running on low energy. When the summer began, something didn't quite feel right. My body was telling me something but the message wasn't clear. In June, I completed my annual C-scan with a follow up PET-scan. The scans revealed a recurrence of cancer. Of course, this didn’t mean that I had to stop dancing. But with a 6-7 hour surgery scheduled for September, I felt it best to not run my energy down before my operation. Then there’s my chemo regimen – three rounds before September…IV infusion of Oxaliplatin, followed 14 days of Capecitabine, an oral chemo, seven days off, then the next round of chemo. One of my side effects has been tiredness/fatigue. So again, it made sense to take the summer off. When my friend, Ivy Vainio, offered to take me to Red Cliff, I didn’t hesitate. Although I was still a few days away from starting chemo, Red Cliff offered the opportunity to get one last dance in. Late in the afternoon, a special honor dance was held for the Pink Shawl Project. “[T]he Pink Shawl Project…raise[s] awareness about breast cancer in Indian country. The project provides Native women with educational resources, a community forum for discussing health issues, access to free mammograms, and the opportunity to honor cancer survivors. "It not only involves healing from these women coming together to create shawls, but we're educating along the way. Then, when women in pink shawls come out during powwows, it creates awareness," said Kris Rhodes, Executive Director of American Indian Cancer Foundation (AICAF). "It's a visual reminder to everyone in these community gatherings that there are cancer survivors among us and it gives hope to people with a new cancer diagnosis. “The Pink Shawl Project began officially in April 2012 through a grant from the Minnesota Affiliate of Susan G. Komen for the Cure. According to Rhodes, this marks the first time the Minnesota Affiliate of Susan G. Komen for the Cure has ever awarded a grant to a Native-run organization in its ten years of funding provision.” (“Pink Shawls Help Fight Cancer,” The Circle, 12/16/2012). Until it was announced, I wasn’t aware that the Pink Shawls would be doing a special. I was not unfamiliar with them. I’ve danced with them before at the Powwow for Hope and other powwows. These women are Ogichidaa’kwe Amogowin, Cancer Warrior Women, who bring awareness and knowledge to our communities. “Data from the Centers for Disease Control Behavioral Risk Surveillance system revealed that in urban areas nationwide, 12.1% of American Indian women between the ages of 40 and 64 had never had a mammogram, compared to 8.4% of women of all other races. According to a press release issued by AICAF, the breast cancer survival rate is 98% if it is discovered and treated in earlier stages, making the disparity in screening especially important to reducing breast cancer deaths among American Indian women. “What happens a lot of times in the American Indian community is that cancer is seen as a death sentence, and unfortunately that's not too far from the truth," said Rhodes. "In our population, too often, cancer is found at later stages where it's harder to treat, so our women are less likely to survive.” “Breast cancer is the third leading cause among all cancer deaths in Indian Country, behind lung and colon cancers. According to figures released by the American Cancer Society in 2011, the incidence of cancer in the Native American population in Minnesota is about two times higher than the nationwide cancer rate. Rhodes emphasized that while cancer rates are either declining or staying the same for the majority of the population, cancer rates are actually on the rise for American Indians.” (ibid, The Circle.) As I danced in the circle, I realized this dance was different for me. I wasn’t dancing just as a cancer survivor. I was dancing because I had cancer inside me. I was dancing because a runaway cancer cell had broken away, traveled through my bloodstream, and like an invasive colonizer, had established a foothold on my liver. The Beast lurked within as I danced for life. As the LCO Badger Singers neared the end of the honor song, I hurried over to their drum and blew my migiziokan-gwiishkoshichigan (eagle whistle). Although I’ve used my migiziokan-gwiishkoshichigan many times for others at powwows, this was the most powerful experience that I’ve ever had. Perhaps it was because I was not only using my whistle for the Pink Shawl dancers, but also myself. Perhaps I had become a vessel for the manidoog (spirits) to pass through that I was calling down for healing. It felt as though I had one moccasin in this world, and the other in Gaagige-minawaanigoziwining (Land of Everlasting Happiness). My eyes were clouded with tears and my body shook each time I went in to the drum to blow my whistle. When I finished, another young man stepped in and used his whistle for the cancer victims in his family. Afterward, I was asked to speak for my migiziokan-gwiishkoshichigan. I briefly told the story of my whistle and explained why I used it that day. There are many powwows that I go to where I realize that I was intended to be there to witness something or participate in something. Such was the case for the Red Cliff powwow. I was meant to be there. Perhaps it was an alignment of manidoog that brought me there. But it was undoubtedly a spiritual experience for me. It was one of many that I’ve experienced on nin-manijooshiwaapine-babaamaadiziwin (my cancer journey). And one of many that have yet to come. Mii sa go. Pink Shawl Dancers preparing for their Honor/Healing Dance. Photo by Ivy Vainio. Pink Shawls Honor/Healing Dance. Photo by Ivy Vainio. Explaining why I used my whistle for the Pink Shawl Honor/Healing Dance (w/ Norman Crazy Thunder, Head Veteran dancer for the Red Cliff powwow). Photo by Ivy Vainio.
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The cancer journey is never easy. There are always questions of whether you should do this or do that. At the very beginning of the journey that begins with the diagnosis of cancer, the first question that arises is – do I really need surgery? What if the tumor that they found isn’t cancerous? Tom Marsilje's article, "Stage IV Life: Taking charge when medical teams disagree," brought back some of my initial thoughts when I was first diagnosed for cancer. www.philly.com/philly/blogs/diagnosis-cancer/Stage-IV-Life-Taking-charge-when-medical-teams-disagree.html In my case, a tumor was found during a colonoscopy. The colonoscopy was performed because there were symptoms that indicated something wasn’t quite right – in my case, a dangerously low red cell count. The surgeon assigned to my case didn’t want to do a biopsy; rather, she wanted to do a resection and remove that part of my colon where the tumor was located. She didn’t want to do chemo or radiation to shrink it. She wanted to remove the tumor and only after surgery would it be biopsied determine if she was right. But first a choice had to be made and it was my choice. However it wasn’t a straightforward choice. Because my surgeon then said: “You know, Robert, you can get a second opinion.” I looked at the drawing she did depicting the area to be resected. If her medical assumption was wrong, then a portion of my body would be removed based on a guess. I could get a second opinion that would perhaps recommend against surgery. But would a second opinion merely be an exercise to, hopefully, hear what I wanted to hear and that I didn’t need surgery? I looked at my wife and asked her: “What do you think?” And she said: “It’s your decision.” Drawing by my colon surgeon, Dr. Genevieve Melton-Meaux. When she drew this, she laughed and said she wasn't an artist. But she made her point. The area below the X is my cecum, and the tip is my appendix. Three polyps are shown - one on the left and two on the right. One of the polyps on the right is the tumor; the sketchy lines are lymph nodes, and the triangular object is my liver. Of course, getting a second opinion would mean finding another health provider to assess my situation, all of which would mean expending more time – and time was critical, especially if my surgeon was correct. And, of course, there was the matter that a second opinion would verify the first opinion. In other words, a loss of time when time was of the essence.
With that thought, I didn’t hesitate to sign the permission/release forms to move ahead with surgery. The point I’m trying to make is second opinions are an option that should be considered. In my case, the thought of a second opinion didn’t enter my mind until my surgeon suggested it. And therein lies a potential problem. Some doctors don’t suggest second opinions. They want to forge ahead with surgery. And sometimes surgery isn’t necessary. What they think may be a cancerous tumor or lesion may not be cancer all. Or other methods can be used – chemo or radiation. Most importantly, second opinions are valid should one’s cancer progress. Tom Marsilje’s Stage IV cancer is an example of that. When it comes to second opinions, take Marsilje’s excellent analogy to heart: “A good analogy I have heard is that as a cancer patient, you are the general manager and head coach of your care. As general manager you hire your players (medical teams) and draw advice from all of them. After all of that (sometimes opposing) advice is given – you as head coach (and patient) need to be the one to make the final decisions based upon what is most important to you.” I'm reading through State Cancer Profiles, just published by the National Cancer Institute and CDC. Always a little tricky reading these. But I looked at Minnesota's cancer profile and focused on Native Americans. The rate of cancer incidence among the Native population in Minnesota is 571.6 (per 100,000); the national average for Native Americans is 280.2. Put another way, cancer incidence is nearly twice the rate of the national average for Native Americans. The mortality rate for Natives in Minnesota is 224.9 (per 100,000); the national rate for Natives is 114.4. In other words, the death rate is nearly double the national average for Natives. If one compares the mortality rate to the incidence rate, 346.7 deaths occur out of the incidence rate of 571.6. or, put another way, the survival rate is 224.9. That means more Natives in Minnesota are dying from cancer than surviving it. Of course, other factors have to be considered - the type of cancer, the cancer stage, and the availability of cancer care. But we clearly have some serious cancer disparities among the Native population in Minnesota.
Those of us who are able need to do more. We need to help educate our people about cancer. We need to tell our survivor stories. We need to tell about our experiences. This is about the War on Cancer among our people, and it is a war that is survivable. We have to help people overcome the Fear Factor. The three worst words you can ever hear from your doctor is "You Have Cancer." But the world doesn't end - it begins. Cancer is not a stigma. We are warriors. From my mindfulness reading of the day:
"So while you are ruminating about the past, worrying about potential hazards in the future, or simply losing yourself in a maze of conflicting thoughts and concerns, you miss the only time you can actually live in: the present moment. Ruminating about the past or worrying about the future happens now, but while you are doing that, you miss all the other things that are also occurring now: a conversation with a friend, a flower's blooming, a blue sky, and a cool breeze. You also miss cues to your body may be sending you: tension in your shoulders and neck, tightness in your belly, a sense of fullness or hunger - information that helps you respond to your body's needs. If you can't live fully now, in the present moment, when can you? There's no time to live other than now, and no matter what difficult events happened in the past or might happen in the future, often in the present moment, things are just fine or at least quite bearable." (from: "Mindfulness-Based Cancer Recovery") Amogowin (Cancer) is a spirit within me. It is my other self in a different shape and form. In the presence of death, I am being taught many things of life. For that I am grateful.
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Robert Desjarlait
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