Perhaps I’m overly sensitive; perhaps not. I know that being a cancer survivor has given me a unique view of the world of cancer. Social media is a part of that world. As such, there are articles, memes, and quotes on Facebook that focus on cancer. Empathy for example. Empathy is popular on Facebook. Empathy can be found on various memes that express prayers or inspirational quotes. Then there are the chain messages, an online version of chain letters. Memes and chain messages are copied, pasted, passed along, and gain a viral presence. I don’t have a problem with chain messages. But for the past few months, there has been a chain message has me wondering about the intent of the message and its expression of empathy for people with cancer. “With a broken heart and tears in my eyes. I can honestly say dealing with cancer and the treatment of is by far the most difficult time I have ever known. I know what cancer and treatment can do to a body and I sometimes wonder if the treatment is worth it in the long haul. It seems to do more harm than good. “Nothing is more painful than trying to smile and remain positive, but after chemo and radiation, you know the person is physically changed and they suffer with this sadness. I know many of you do not give a hoot about this message because, of course, the cancer has not touched you. You do not know what it's like to have fought the fight or had a loved one who leads a battle against cancer. “For all the men and women I know, I ask you a small favor and only some of you will do it. If you know someone who has led a battle against cancer, still struggling or who passed, please add this to your status for one hour as a mark of support, respect and remembrance. “Copy and paste to support those affected by cancer. Do Not Share. From your phone or tablet, hold your finger on the message to copy and paste on your page.” When I first read this chain message, the negative focus on chemotherapy stood out. Is it written by someone who had a bad experience with chemo and/or radiation? It seems so. But there are things in this message that indicate otherwise. The anti-chemo movement of Cut! Born! Poison! is popular on alt-med sites. It’s this mindset that opens the door to quack doctors and wondrous, but ineffective, remedies to “cure” cancer. For example, the writer wonders “if treatment is worth it in the long haul. It seems to do more harm than good.” Then in the second paragraph, the writer notes that a “person is physically changed and they suffer with this sadness.”
The problem is the writer is generalizing the experience of chemo/radiation as something that is horrible. That runs counter to the things that I’ve heard. One of the stories that come to mind is a comment from a supporter who recently wrote about a woman who danced contest at the Hinckley powwow. The dancer had just finished her last round of chemo that morning and said she felt great. So did chemo do her more harm than good? Or the story that was sent to me by someone who had Stage IV cancer and, through chemo, beat it. Did chemo do her more good than harm? Then there are the comments and stories at Blue Hope Nation – A Colon Cancer Alliance Community, one of several online cancer communities that I belong to. The majority of comments at Blue Nation are by people going through various stages of chemo/radiation and by those who have already been through chemo/radiation. I haven’t seen anyone vilify chemotherapy. Some people talk about the difficulties they’ve experienced with chemo side effects. But I have yet to see anyone say that chemo does more harm than good. The larger problem with the chain message is the fear it creates for someone who has just been diagnosed with cancer and they are facing chemo/radiation. Perhaps the person knows very little about chemo. Perhaps they are not aware of the online communities for cancer survivors that help people overcome their fears and help educate them. What is this person to think if they read the chain message? What kind of fears will be stoked when they read that chemo does more harm than good? This isn’t empathy. This is fear-mongering. The chart below is from the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. It gives the Five-year Relative Survival Rates by Stage at Diagnosis (2005-2011). The rates provide the percentages of cancer patients who are alive after using cancer therapies including chemo and radiation. There are survival rates of over 50% in twelve of the categories. In six of the categories, the survival rate is under 50%. The categories under 50% are extremely aggressive forms of cancer and difficult to treat, hence the lower rates. What the rates how is cancer is very survival in twelve categories through cancer therapies that include chemo and radiation. Tell me again – chemo does more harm than good? Really? If that is your empathy, I don’t want it or need it. Please go elsewhere with it.
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This morning, I received word on my chemo regimen. It’s a two part plan – Xelox (Xeloda/Capecitabine) and Oxalplatin. Xelox is taken orally and Oxalplatin is administered by IV. (Looks like I’ll be earning my survivors badge of honor since I’ll need a port for the Oxalplatin.) Both are used in combination to treat colon/colorectal cancer.
I haven’t been given specific details about my treatment by my cancer team at this point. I’ll find out more about that next Thursday when I begin chemo. But I did get some information online – and I recommend to anyone in my situation to look things up and educate yourselves…there is a lot of info available on the internet. According to Cancer Research UK, one of my main go-to places for cancer info: You usually have chemotherapy as cycles of treatment. You may have between 6 and 8 cycles. Each cycle lasts 3 weeks. On the first day you have a 2 hour drip (infusion) of oxaliplatin and begin taking the capecitabine tablets twice a day
LOL, I think the least of my side effect worries is loss of fertility. So that’s where I am today. My RN mentioned that I have to see ENT about the Warthin’s Tumor…and it sounds to me that Dr. Green, my oncologist, wants that removed…he doesn’t want to leave anything to chance. And I also have to see Dr. Greeno’s assistant. As my friend Bilbo says: “The road goes ever on.” And I have a long way to go before I reach Mithlond (the Grey Havens). Usually I don’t post articles on cannabis as a curative for cancer because I don’t subscribe to the notion that cannabis can cure cancer. There is an abundance of cannabis-as-cure sites on the internet that promote wondrous cannabis cures for cancer. These cures are largely promoted by recreational users who use medicinal marijuana as a foil to justify their own use of pot. Certainly medicinal marijuana has its uses in conjunction with chemotherapy, but its properties to cure cancer have yet to be proven. There are studies that indicate cannabis can inhibit the growth of cancer cells in a petri dish and in mice. But humans aren’t petri dishes nor are they mice. Recently an article caught my eye on my Facebook Newsfeed. It was published at Asbestos.com, a site that is hosted by the Mesothelioma Center. Asbestos.com isn’t an alt-med site. Nor is the Mesothelioma Center a Club Med type of holistic center that caters to rich clientele and doles out expensive quack cancer remedies to patients. The Mesothelioma Center is a respected organization that provides information and support to those who suffer from “asbestos-related cancer malignant mesothelioma—also known as asbestos cancer—or from asbestos-related lung cancer.” The article in question, “Mesothelioma Survivor’s Wife Explains His Cannabis Oil Treatment,” was published on April 4, 2016. It’s basically an update from a previous article, “Mesothelioma Survivor Credits Cannabis Oil Treatment to His Recovery” (11/14/14, Abestos.com). In 2010, Andy Ashcraft's malignant pleural mesothelioma became terminal. He participated in an immunotherapy clinical trial that held his cancer at bay. Three years later, his clinical trial drug, Amatuximab, stopped working. “His doctor suggested palliative care and a hospice facility for his final weeks as the tumors grew.” With the insistence of his wife, Ashcraft began using cannabis oil. His tumors stopped growing. In the three years since he began his regimen of cannabis oil, the progression of Ashcraft’s cancer has ground to a halt. The salient points in Ashcraft’s remedy is the cannabis oil is ingested via gel capsules – in other words, the oil isn’t smoked or vaped. Instead of using butane or naphtha, that contains dangerous chemicals, Ashcraft’s oil is extracted with 100 percent grain alcohol or carbon dioxide. The extracted oil is high in CBD content with little THC content. As his wife points out: “What we paid most attention to were CBD (compound with medical benefits and no mind-altering ability) vs. THC (primary ingredient that alters senses).” He takes four capsules a day that total one gram. The cost for his cannabis oil treatment is approximately $1,000 a month. And of course it helps that he lives in California where medicinal marijuana is legal. It’s important to note that Andy and Ruth Ashcraft are not claiming cannabis oil is a cure for cancer. Ashcraft hasn’t been cured of his cancer – he still has his cancer. The cannabis oil that Ashcraft uses has apparently prevented cancer cells from forming new tumors. As his wife Ruth states: “We both feel that in order to fight this disease, it is mandatory to keep a positive attitude and faith in God. We think the cannabis protocol has helped, too.” In other words, Andy Ashcraft’s recovery isn’t attributed solely to cannabis oil, but also to a strong connection to faith and mindset. In relation to the article, Asbestos.com has emphasized that they do not endorse the use of cannabis as a remedy. In their disclaimer, Asbestos.com states: “Asbestos.com does not condone or promote the use of cannabis oil for the treatment of mesothelioma.” Certainly Ashcraft’s recovery gives hope to cancer patients. But one needs to approach his story with caution. Bear in mind that Ashcraft was in the last stages of his cancer and it was terminal. He had absolutely nothing to lose. The point is that cannabis oil isn’t going to, in general, avail cancer patients of their disease. One of the main problems is trying to ascertain Ashcraft’s reason for his recovery. Was it cannabis oil or something else? He was taking an immunotherapy drug, Amatuximab. Did Amatuximab somehow react to cannabis oil? We don’t know if cannabis oil was the sole reason for his recovery because it can’t be proven. If several other cancer patients with Stage IV malignant pleural mesothelioma stepped forward and were able to show that the growth of their tumors stopped because of cannabis oil, then there would be tangible evidence. And should it be proven, it would show that cannabis oil is effective therapy for malignant pleural mesothelioma but not necessarily for other types of cancer. And there are over 200 types of cancer. But who knows. Perhaps cannabinoids may have a future role in cancer therapy. A 2014 peer-reviewed study “suggests” that cannabis extracts combined with radiotherapy treatments slowed the growth of brain cancer tumors in mice (Molecular Cancer Therapeutics, 2014). But it may be a moot point since immunotherapy shows great promise. Despite the Asbestos.com disclaimer, the Ashcraft articles lend a certain legitimacy to cannabis as a curative for cancer. And some desperate patients will use it to justify their placebo therapy for their cancer. On the other hand, if one is terminal and at the end of the line, one has nothing to lose. If you're interested in reading more on the cannabis and cancer issue, you may want to check out this article I wrote in June 2014 and published on my cancer web site Manjooshiwaapine Babaamaadiziwin (The Cancer Journey). A lengthy but detailed article. Red Herring: Cannabis and the Cure for Cancer
anishinaabecancerjourney.weebly.com/blog/red-herring-cannabis-and-the-cure-for-cancer Today (6/24), I met Katarina Hagstedt and Martin Inderbitzin, who flew all the way from Switzerland just to see me. Well…sorta, kinda. I was one stop on their current tour to film a documentary for their organization – My Survival Story. Their organization is located at Zürich, Switzerland. My Survival Story was founded by Martin and based on his vision: "Based on my personal experience as a patient I realized that it is very helpful to listen to people, hearing stories of other patients and see how they cope. I also realized that there is no place online where such stories are collected. Our vision is to portrait inspiring stories and make them available to those who need it most.” As stated on their web site: “The project is run by Martin and his partner Katarina, both with multiple years of experience in the production of media content and online marketing. The two decided to quit their jobs and dedicate their full attention to the project traveling the world to find more stories.” Today, I became one of their stories. Of course, I never expected to be talking to anyone from Switzerland, especially as a cancer survivor. The hook-up came from Joy Rivera of the American Indian Cancer Foundation. She gave my name to Katerina, and Katerina contacted me via email. She said her and Martin would be in Minnesota in late June and wanted to interview me. When I first wrote to Katerina, I was a Stage I colon cancer survivor. Serious but in a fairly comfortable situation considering there is a 93% 5-Year survival rate for Stage I colon cancer survivors. By the time we did the interview, my situation advanced to colon cancer mets with a lesion on my liver. As a result, I had a bit more to talk about. It was a great interview. Martin did the filming and Katarina did the interviewing. Questions about my life, growing up, sobriety, family, art, cultural values and beliefs, dancing, and, of course, cancer. Originally, the interview was scheduled for an hour, but we ended up talking closer to two hours. Katarina and Martin are next heading to Colorado and California. Then they will go to Japan. This should be a great documentary with a wide array of culturally diverse cancer survivors. So many stories told, so many journeys. The video won’t be released until the end of the year, but it will be worth the wait. On the cancer journey, you meet interesting and wonderful people. Katarina and Martin are two such people. I am so glad to have met them and now they are a part of my life and my cancer journey. I wish them sincere blessings on their journey ahead. A group selfie with Katarina and Martin. Two photos with Martin asking me about my dance regalia. Both Martin and Katarina were keen on wanting to learn about the powwow and my role as a dancer. If you want to learn more about My Survival Story, please visit their site. An inspiring web site for those on the journey and the caregivers who support them.
I met with the new addition to my cancer team, Dr. Eric Hans Jensen. He will be doing my liver surgery. A very affable doctor with a laid back demeanor. When he came into the clinic room, he said he liked my purple Survivor t-shirt from the Relay for Life. He said: “We wear a lot of purple around here.” I pointed to my Vikings hat and said: “But not for the Vikings?” “Well for that too,” he smiled and laughed. Then I told him about dancing at the Vikings half time show last year. He thought it was pretty cool. Then he got down to business and laid out the battle plan. He pulled up the C-Scan and pointed out what portion of the liver would be removed. But before the surgery can happen, he said I would be on chemo first to kill off any cancer cells floating around in my blood. He said it was unusual for colon cancer mets to show up on my liver since I was Stage I. He said some cancer cells had gotten into my bloodstream and made their way to my liver. In cases like mine, they like to do chemo first. There will be two months of chemo, a break of six weeks, then surgery. Surgery won’t happen until September. I’ll start chemo next week. He didn’t know what kind of chemo that I’ll be using. It will be up to Dr. Greeno, who is the head of my cancer team. He wanted me to go through chemo training today, but Dr. Greeno wasn’t available. Chemo training is simply educating me on the type of chemo drug they’ll be administering, its side effects, and whether it will be oral or injected. If it’s injected, I’ll get my survivor badge of honor – my very own port on my chest. Consider it equal to taking a scalp. And speaking of scalps, I'll most likely keep mine. Dr. Jensen said that the chemo that I'll be given most likely won't result in losing my hair. So much for channeling Brando as Col. Kurtz. The hernia will also be removed. Although he can do the hernia surgery, he’s turning it over to another specialist. I’ll meet with her next week and she will explain the procedure. I will be so glad to get rid of this grotesque reminder that The Beast has left behind. The Warthin’s Tumor is up in the air. It will be up to Dr. Greeno to decide to have it removed. As Dr. Jensen pointed out, there is only a 0.3% chance of it becoming cancerous. If the decision is made to take it out, it will happen on the same day of the liver and hernia surgery. Then the subject of my diverticulosis came up. These are small pouches in the colon that can become inflamed. I’ve had some hellacious nights because of inflamed diverticulosis. If those were to become infected, then my colon would be removed. You can live a normal life, including a sex life (as if that really mattered. Sex life? What sex life?), but, hmmmm, I don’t want to go into the details of what life would be like without a colon. I definitely don’t want to have to go through that. Dr. Jensen recommended a low fiber diet before surgery – beginning now. No peanuts or nuts (I told Nan, hey, I can eat cashews…cashews are actually a fruit, but she didn’t fall for it). Corn on the cob is out, along with (gasp) popcorn. No whole wheat bread with grains. Nothing with seeds. Seeds and nuts can get into the pouches and cause inflammation and, in the worst case scenario, infection. Dr. Jensen said he would talk to Dr. Genevieve Melton-Meaux, the surgeon who did my colon surgery in 2013. He thinks it’s a good idea for me to meet with her. She might want to do an exam and probably come up with a nutrition plan. I really hope to hook up with her again. She is one of the heroines in my life. So, the way things are shaping up - two months of chemo, surgery in September, followed with four more months of chemo. Surgery will take about six hours (for the liver and hernia). Expected hospital stay of 3-5 days (and I know it will be 5 days because of the hernia op). Expected recovery period for the surgery is 6 weeks, and total recovery of a few months. No activities involving exertion during that period. Or translated another way, no dancing for a while. As he left the office, Dr. Jensen said: “See you in September.” In the interim, I’ll be seeing others doctors and, of course, running back and forth for chemo. In the meantime, I’d like to introduce you to the son of The Beast. No, this isn't a Vainio. It's my C-Scan from 5/23/16 in which the son of The Beast reveals itself. The perspective is looking up from my feet toward my head. On the left is a poorly made pancake with an over-easy egg inside my abdomen. Actually it's my liver. It looks like the liver is separated, but there is a ligament between the right lobe and the left lobe. The dark mark on the left lobe is the cancer - a lesion measuring 2.4 x 2.2 x 2.2 cm. The left lobe will be removed along with an edge of the right lobe.
Addendum: I finally got to meet Argy Goodfriend, the RN on my cancer team. I've spoken to her over the phone and communicated with her via email. She's doing the chemo training. She came into the clinic room to talk about the training, but wasn't able to do it because Dr. Greeno wasn't available. She is an older woman who is friendly and pleasant to talk to. She said it was nice to finally put a face to someone she has only spoken to on the phone and written to via email. She covered some chemo basics, but we don't know the details of the type of chemo that I'll be given. Goodfriend...great name for a nurse. ...for the ecocide of the environment. The cancer within my body is like the insidious cancer of tar sands and mining. We are the mirror of our Mother. The Beast connects us all.
Alt-med sites are known for their wonder cancer cures and the numerous products that allegedly offer relief from cancer. The formulas and extracts that they promote are based on folk remedies or quack remedies. None of these products, and the quack theories attached to them, has ever been proven to provide any cures or therapy for cancer patients. Unfortunately, desperate people will try anything, hence the popularity of quack remedies. About the only thing they are good for is a placebo effect.
Ojibwa Herbal Extract is one such remedy. Testimonials from users attest to its curative powers for not only human beings but also cats and dogs. According to the product information, Ojibwa Herbal Extract is a “concentrated blend of high-quality, alcohol-free, 4:1 herbal extracts formulated according to a traditional Ojibwa Indian formula.” The ingredients include Burdock, Sheep Sorrel, Slippery Elm, and Turkey Rhubarb. Ojibwa Herbal Extract is a variant of Essiac Ojibwa Tea. According to quack myth, a Canadian nurse named Rene Caisse, met a woman from England who had been cured of breast cancer by an “old Ojibwa Indian medicine man in the 1890s.” The English woman passed the formula to Caisse. Caisse refined and perfected the original "medicine man's" formula. Quite amazing that Caisse, who was only a nurse, became an overnight cancer researcher. “She tested various herbal combinations on laboratory mice and on human cancer patients. She eventually reduced the tea to four herbs: burdock root, sheep sorrel (whole herb including the roots), slippery elm and Turkey rhubarb. She called the formula Essiac, which is her surname spelled backwards.” Once she had perfected the formula, Caisse opened a cancer clinic in Bracebridge, Ontario. Although Caisse’s extract was used for a number of other health aliments, its main claim to quack fame was, and continues to be, a curative for cancer. As such, alt-med herbal manufacturers sell the product under their own label. Never mind that the FDA and cancer research centers and organizations have rejected Essaic’s claim as a curative. As a placebo, yes, as a curative, no. If only cancer was this easy to cure. I have an appointment with Dr. Jenkins on Wednesday at the Masonic Cancer Center. He'll be performing my liver surgery to remove the lesion on my liver. I'll also find out if they will remove the Warthin's Tumor in my neck, and my cancer scar hernia. And I should find out about chemo, although they will most likely do a biopsy of the lesion first. It's not really gloomy news. But it solidifies the reality of recurrence and that this damn disease creates a presence that doesn't let go.
On the brighter side, Katarina Hagstedt and Martin Inderbitzin will be here on Friday to interview me. They run an organization called My Survival Story based in Zürich, Switzerland. Hard to believe that a couple from Switzerland is coming to see me. I'm really looking forward to meeting them. Fatherhood is a sacrifice, but it is one you have willingly chosen. Throughout your life, you have provided, taught, and protected those who you lovingly created or those you have helped to raise. In the days of your sickness, your role hasn’t lessened. May the Creator bless you with strength and fortitude in the days ahead. May the songs of life that you sing and teach be forever echoed in the voices of your children, your children’s children, and unto the Seventh Generation.
I was reading Mpls.St.Paul Magazine’s article on their 20th annual Top Doctors edition. The doctors were chosen by their peers. The list included 864 doctors in the metropolitan area; 141 University of Minnesota Physician doctors were chosen.
Among those doctors are my cancer team doctors - Hematology/Oncology: Edward W. Greeno (who is my oncologist and who is at the top of the Oncology list. A very cool doctor with a calm, compassionate demeanor); Colon and Rectal Surgery: Genevieve B. Melton-Meaux (who performed my colon cancer surgery in 2013. I love this doctor for her compassion, concerns, and support she gave me in the months following my surgery); Surgery, General: Eric H. Jensen (who I have yet to meet but will meet soon. He’ll be performing my liver surgery). I’m grateful to have these healthcare professionals on my cancer team. Not everyone is fortunate enough to have great doctors (and nurses, what can I say about my beautiful nurses…I love all of them) in their battle against cancer. And when we have great doctors, we often overlook them and don’t give them the credit they deserve. Rather odd considering these people are there to save our lives. So with that, Gicihi-mii’gwech to the doctors (and nurses) who have helped me navigate this often treacherous path. |
Robert Desjarlait
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