Cancer Feathers at Bad River Manoomin Powwow / Photo - Bemused Photography and Design My name is Robert DesJarlait. My Ojibwe name is Endaso-Giizhik. Gichi-miigwech to the Bad River powwow committee for the opportunity to speak for the American Indian Cancer Foundation eagle staff. Although I'm not a veteran, it’s always an honor to be among the veterans bringing in their staffs and flags at the beginning of a powwow and to dance next to those who have served to protect our tribal nations. Eagle staffs represent veteran organizations. Other staffs represent families and community organizations. Together, these eagle staffs represent the indigenous people of Turtle Island. I’ve been an eagle staff bearer for many years. I am the Keeper of the Cherish the Children eagle staff. This summer I’ve traveled to powwows with the American Indian Cancer Foundation eagle staff. I’ve been to powwows throughout Minnesota with this staff. Bringing it to Bad River is significant because it is the first powwow I’ve brought it to outside Minnesota and it will be the last outdoor powwow that I’ll be bringing it to for the year. The cancer staff was made by my wife and me. It was based on a dream vision I had. We made the staff last year and gifted it to the American Indian Cancer Foundation at their Powwow for Hope. There are 15 bald eagle feathers on the staff. Each feather represents one of the 15 major cancers such as breast cancer, lung cancer, childhood cancer, and colon cancer among others. Each feather is wrapped in the color for that cancer. Although 15 cancers are represented, there are 100 types of cancer with over 100 subtypes of cancer. The panel that the feathers are attached to is purple. Purple is the color for all cancers. The golden eagle feather on the tip is for the caregivers. Caregivers are the ones who help take care of us, who get us to our appointments, remind us of our medications, and encourage us to eat healthy foods. The work they do can be difficult and hard. My wife is my caregiver. Without her, I wouldn’t be here. I’m a Stage IV cancer survivor. In 2013, part of my colon was removed. In 2016, a tumor on my liver was removed and I went through 16 rounds of chemotherapy. Last year, when I came to the Bad River powwow, I was bald, had no body or facial hair, and was going through chemo side effects. I was sick from the chemo but I had a commitment to be here. We have high rates of cancer in our communities. Every day it seems like someone gets cancer or passes on from cancer. I personally know several people who have contracted cancer in the past few months. It's a disease that deeply affects our people. Many people don’t talk about cancer. For others, the word is a stigma. It’s as if you mention the word and you will get cancer. It’s important that people become more educated about cancer and talk about it. Learning about the symptoms and signs of cancer can help to prevent it. And save lives. Miigwech for letting me speak for the cancer feathers. Mino ayaa sana Anishinaabedoog. Posting the AICAF eagle staff at Bad River / Photo - Bob Jauch Speaking for the cancer feathers at Bad River / Photo - Ivy Vainio Note: Several people requested a transcript of my speech. The short speech that I gave at Bad River wasn't written out. As such, this is the best as I remember it. Whenever I'm asked to speak, I do so in the manner of Ojibwe orators. The words aren't written but rather spoken from the heart. © Robert DesJarlait, 2018
Photos / Courtesy of the photographers
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How powerful is hope? For me, the power of hope was expressed in a recent status that I posted on Facebook: CT scan results - NED. Stage IV Survivor - 18 months cancer free. I posted my status on my Timeline and at Blue Hope Nation, a colon cancer support group. My status generated over 730+ responses. I had expected a few hundred responses, but never the number that flowed in throughout the day. I clearly underestimated the power of hope to others. That’s not to say that I misunderstood what hope means to cancer survivors. Many of us know that hope is a life lived in remission. Hope for another day, another week, another month, another year. For some, remission can last for years. But hope doesn’t come easy. In May 2013, my ascending colon removed through laparoscopic surgery. I was fortunate because the tumor didn’t breach the walls of my ascending colon and invade my lymph nodes. I was Stage I with no need for chemo albeit I was considered a high-risk cancer patient. Low-intensity surveillance followed - one CT scan a year for five years. Once I reached that five-year benchmark, I could consider myself as cancer free. I had great odds - 93% five-year survival rate for Stage I survivors. Then, in my third year CT scan, to the surprise of my oncologist, the cancer reappeared in the left lobe of my liver. My initial hope of being NED for five years was dashed. My designation as a survivor changed to Stage IV. And my battle with The Beast was renewed. The new battle began with four rounds of neoadjuvant chemo - monthly infusions of Oxaliplatin with a daily intake of Capecitabine tablets. In November 2016, I was in OR for open surgery for nine hours - three hours to remove the left lobe of my liver and six hours to remove a large, incisional hernia that was a result of my 2013 colon cancer surgery. My adjuvant chemo consisted of twelve rounds of Irinotecan followed by a high-intensity surveillance program of CT scans every three months for two years and two CT scans a year for three years. So now I am back to the five-year program. Certainly I’m battle-weary. The surgery has scarred my body and the chemo has left its mark. But scars, cancer PTSD, lingering after-effects, and peripheral neuropathic problems are a small price to pay for my renewed hope. On my journey, I’ve learned that you have to face death to know the value of life. Cancer survivors know all about this. We live a life of hope because our hope is predicated on death. And death has dwelled within us. Our experience with death isn’t objective. Our experiences are subjective. Death has spoken to us through our mutated cells, diseased organ(s), and the scars on our body. Conventional medicine can remove the tumors and diseased cells, but it is hope that guides our spirits. I’ve found that my hope has become the hope of others who have to deal with this daunting and insidious disease. This was best summed up by a survivor who responded to my post: “Wonderful! Thanks for sharing and giving newbies HOPE! Celebrate.” Yes, I will celebrate. Each and every day, I will celebrate. That is the power of hope. Sometimes on the field of battle, victory isn’t measured by the relinquishment of the foe. Rather, it can be measured by the depth of one’s hope. And that is a depth that reaches far into one’s heart. © Robert DesJarlait, 2018
Once again, FB (Facebook) armchair oncologists are busy posting an article that purports to warn people about the dangers of chemotherapy. The headline is an eye catcher – “Shocking New Study Shows Half of Cancer Patients are Killed by Chemotherapy, Not Cancer.” Never mind the fact that the study came out in 2016. Alt-med sites, with their unending war against chemo, have regurgitated the study and time-stamped it as August 2018 to give it the veneer of current information. In turn, FB armchair oncologists re-post the “current” article and enable the alt-med circle of misinformation to continue unchecked. By unchecked, I mean that alt-med proponents and armchair oncologists don’t bother to read the actual study. To do so would undermine their idea that chemo kills people rather than save lives. And alt-med doesn’t want to sell the idea that chemo can save people. Rather, they would have you believe that their alternative medicine remedies will save you. The study in question is “30-day Mortality after Systemic Anticancer Treatment for Breast and Lung Cancer in England: a Population-based,Observational Study,” Michael Wallington, Emma B Saxon, Martine Bomb, Rebecca Smittenaar, Matthew Wickenden, Sean McPhail, Jem Rashbass, David Chao, John Dewar, Denis Talbot, Michael Peake, Timothy Perren, Charles Wilson, David Dodwell, published August 31, 2016. Interestingly, there is nothing in the study that explicitly states that half, or 50%, of cancer patients are killed by chemotherapy. Rather, the authors state: This study shows that the SACT [Systemic Anti-Cancer Therapy] dataset provides insight into the factors affecting early mortality of patients in England. It suggests that treatment intent (curative or palliative), age, performance status, whether patients had received SACT before the qualifying treatment used for this study, and sex and stage (lung cancer only) all affect the 30-day mortality risk. The discrepancies between patient categories for each of these factors point to opportunities for improvements in care. The identification of hospitals with significantly higher 30-day mortality rates will promote review of clinical decision making in these hospitals. The findings presented here could be used to improve clinical outcomes. Note that the study suggests treatment intent. And that the findings could be used to improve outcomes. The use of such words imply that the study is non-conclusive and further studies need to be made. In regard to chemo, the study states: Although we identified several factors affecting 30-day mortality risk, our population-based dataset included only patients that received SACT, so we cannot confirm whether patients would have had better outcomes if they had not received SACT. Similarly we cannot assess whether patients who did not receive SACT might have benefited from treatment. Our data also suggest that 30-day mortality might be higher than previously estimated by several clinical trials. The 30-day mortality rate after SACT with curative intent for NSCLC reported here is high at 3% compared with published trial data for the standard treatments, which suggested that 0·8% of patients died from treatment-induced toxicity when chemotherapy was given as adjuvant treatment alongside surgery. These patients have been assessed as fit enough for radical curative treatment (eg, thoracic surgery with adjuvant systemic anticancer therapy), estimated to increase the average NSCLC 5-year survival by 4–5%, as reviewed by Heon and Johnson.28 Therefore, the high mortality rate we report here is a concern because it could reduce any benefit from this intervention. It amazes me how alt-med spin doctors conjure misconceptions from facts. And, sadly, FB armchair oncologists, with their knee-jerk reactions, re-post alt-med’s false claims as if they were scientific proof. In doing so, they help feed the fears of cancer patients who are dealing with a life-threatening disease. After all, why take a treatment if it has a 50% chance of killing you? The critical problem is that most people - in particular, people who don’t have cancer - are not educated about the nature of chemotherapy. If they were, they would know that chemo isn’t about curing cancer. It never has been. Chemo is about giving a terminal patient another day, another week, another month. Chemo is about shrinking cancer cells before surgery. Chemo is about killing cancer cells after surgery. Chemo is about killing cancer cells that have re-invaded a patient’s body. There is no doubt about it - chemo is powerful. It has a multitude of side effects; its debilitating after effects can last for years. It may or may not send cancer into remission. Its efficacy is dependent on several factors including one’s age, health conditions, and immune system. There are no guarantees. I know from personal experience the effects and lingering after effects of chemo. I went through 16 hard rounds of chemo - four rounds of neoadjuvant chemo with a regimen of Oxaliplatin (Eloxatin) and Capecitabine (Xeloda) and twelve rounds of adjuvant chemo with a regimen of Irinotecan (Camptosar). I went through total hair loss, fatigue, nausea, diarrhea, loss of appetite, weight loss, cold sensitivity, peripheral neuropathy. Some of those remain issues that I deal with today long after my chemo regimen ended. Despite the difficulties, I have never once regretted taking chemo. As of this writing, I have been NED for 19 months. And chemo has played a crucial role in preventing my cancer from metastasizing. And I’m not alone. There are countless other survivors who will attest to the fact that they are alive because of chemo. However, alt-med proponents and FB armchair oncologists would rather ignore the inconvenient truth about chemo. The main danger is the impact that such misinformation has on newly diagnosed cancer patients. They may decide to refuse treatment based on the falsity of alt-med's claims. Certainly, cancer patients have the right to decide whether they want chemo. But their decision should be based reliable information rather than the misinformation disseminated by alt-med proponents and FB armchair oncologists. Armchair oncologists, in particular, may think they are helping to save people when, in fact, they may be sending them to an early, agonizing death.
© Robert DesJarlait, 2018 |
Robert Desjarlait
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